History

Wednesday, September 26, 2007 4:35 PM CDT

Just a quick note to let you know that Laura is dong just great. She likes, not loves, middle school and is keeping up with her work.

We had a visit with her transplant dr. last week and he agrees that all looks well. Her labs are fine and she's no longer taking Valcyte (anti-viral med).

Special thanks to all who took time to celebrate Laura's one year transplant anniversary with us. It was an awesome day.

Keep up the good work, Laura!

Thursday, August 30, 2007 10:42 AM CDT

It's a significant day for us as we recall Laura got called for transplant one year ago today.

I'll never forget the phone call I got from Matt, Laura's brother, at 6:30 a.m. and how excited he was. We had to drag poor Laura to the hospital from a sleepover she was having at Gramma B's house. She was SO mad because they were in the middle of making cinnamon rolls, and she didn't get to eat one.

After a long day with any food water OR cinnamon rolls, she went into surgery about 7:45 p.m. and was post-op about 5:00 a.m.

Please say a prayer for the donor's family, we know that they were from the state of Minnesota and have been without their loved one, who was about the same age as Laura, for about a year now.

As you may know, that liver did not last long in Laura's body. She first had a rejection episode with it and shortly after an artery that was attached to Laura's artery from the donor clotted off and failed to deliver blood to the right side of her new liver. The right side of the liver died inside of her within 10 days of transplant and she was surviving with just the left lobe keeping her alive.

On September 19, 2006 she was recieved a second liver transplant. This liver was a small adult liver, the surgey team had to fly to another state to get it. That liver saved her life. Please say a prayer for the donor's family as they also have been without their loved one for about a year now.

Laura has been through so much and she has handled it so well. Her last hospital stay ended Christmas Day and she has recvored beautifully from the operations, procedures, weight loss, transplant complications, viral/bacterial infections, etc. She is the strongest person I have ever met. We love her so much and she is a blessing a million times over.

Currently, Laura is doing very well. After a mostly normal summer, she'll be starting school soon and is somewhat excited about that. Laura's making the jump from fifth grader to middle schooler. She's going to miss all her friends at elementary. Her liver is doing well, labs are looking good with liver enzymes at 58 ALT, 64 AST but bilirubin is at 1.5, just slightly elevated.

We decided to celebrate Laura's One Year Transplant Anniversary by having a special "Transplant Day" cake festival on Sunday, September 16, 2007 at First Lutheran Church, 1555 40th Avenue Northeast, Columbia Heights, 55421 from 9:00 to 12:30. If you'd like to attend church services, they will be at 8:45 and 11:00 a.m.

Laura has picked out some interesting cake, filling and frosting combinations from Lindquist cakes. If you are looking for white cake with white frosting, you may be disappointed. Everyone is invited, please stop and join us. We'd love to see you.

Wednesday, August 8, 2007 1:44 PM CDT

Laura's still doing just fabulous! She's a mommy to a 10 week old Cavalier Spaniel pup that we've had for about a week now. Puppy's name is Belle, please don't call her "Ding dong Belle" or you will get in serious trouble. Belle is very sweet and enjoys chewing especially on Laura's nose!

I updated the "view photos" page with a picture of Laura and Belle.

Laura's labs are doing well, her enzymes are returning to normal. Her bilirubin inched up to 1.8. I have no idea why, but transplant is not worried about that at this time. Our next lab draw is next week.

Saturday August 18th we'll be hosting the Liver Families Hugs and Hope Day Picnic at Kordiak Park in Columbia Heights. If you'd like to meet other kids and families dealing with liver disease and transplant, please stop by from 12:00 to 4:00. E-mail me at the bottom of the page so we can have food for you.

Stay cool.

Thursday, July 19, 2007 6:46 PM CDT

Laura had a terrific, awesome, spectacular time at horse camp last week. She rode Paulina, the Icelandic horse all week long and those two made a great pair. She got to style Polly's mane and tail, paint her, shovel out her stall, ride Polly in the lake for a dip and have daily long rides to destinations around the area.

Laura had a great time with all the new horsey girlfriends she met and was begging to go to horse camp again. Mary, the camp director, said this was the best bunch of horse campers she has ever had.

When she got home, she was exhausted, very dirty, and smelled like manure. She left a heap of sand in the bath tub from all the dust blowing around and then slept soundly for 12 hours until I finally had to wake her up for meds.

We saw her transplant doc today for a follow up visit and he suggested that we cut down on the Reglan she's taking and stop her Prevacid all together as her gut issues seem to be a thing of the past. She also got her Prednisone tapered a bit from 10mg to 7.5mg and she will be weaned off Prednisone very slowly as we aren't certain that rejection was causing her most recent bout of elevated liver enzymes.

Exactly two months from today we'll be seeing her transplant Dr. again as that would be her one year tranpslant anniversary. I guess we have to bring cupcakes for the transplant nurses on 6B and one for Dr. Humar.

Currently her labs are s-l-o-w-l-y returning to normal. Her liver enzymes are both about 75 and will be back to normal soon. LAURA WEIGHS !!!93!!! POUNDS!!! That's a gain of 13 pounds in the last 3 months and it's a far cry from the 75 she weighed back in January. She's been eating at Subway every chance she gets. She's also a couple centimeters taller.

Before I forget, as if horse camp wasn't enough we went to the Twins game on Sunday afternoon and got to go down on the field for "Love Your Liver Day" at the Metrodome. While we were making our way back up from the field we saw Boof Bonser and Jason Kubel coming down to the dugout. How cool was that?!

Laura is our little miracle (when I say "our" I mean everyone!). She is a blessing and has been greatly blessed. Thanks for reading.

Friday, July 6, 2007 12:04 AM CDT

Well, it's nice to make it through another holiday withOUT being admitted to the hospital. That means we were free to see fireworks on the Fourth of July.

Laura's liver numbers are still heading downward with ALT/AST at 124/87. Much better than 363/296 and we're hoping we get to "normal range" of 0-50. Of course whatever mysterious events conpsired to cause problems are still unknown. Her Dr.'s are content to see how things pan out. We are still waiting for results on an iron study she had at yesterday's blood draw.

Laura has been feeling very spunky, so good that she skips more than she walks. We are counting down the days to Horse Camp, 3 more and then Monday is the big day! Laura is SO excited that we read every bit of information on the schedule and packing list before bed every night.

Next week she'll take care of her assigned horse Paulina an Icelandic horse that has a smooth fast trot and more mane and forelock than Cousin It on the Addam's Family. Laura gets to style Paulina's mane every day, on Tuesday she gets to paint and decorate Polly for the horse decorating contest. She's even excited abut cleaning up Polly's stall, horse fever has struck.

Miss Laura is convinced that she can be in charge of her own meds while she's at camp apparently it's embarassing to have your mom check on you. We'll see how it goes. Anti-rejection meds can't be skipped or rejection/damage can occur. I may have to engage a network of spies and informants.

Besides being horse crazy Laura has turned into a little Beatle fan. I bought "A Hard Day's Night" and an early live Beatles performance on vhs at a garage sale for fifty cents and she has watched them probably 10 times in the last week. Beatlemania has struck! Ringo seems to be her fave. I have listened to Octopus's Garden just about half a billion times, but I can't complain. I am so thankful for her recovery.

Cross your fingers for some cool horse riding weather next week. If I can enlist a teenager for help, I'll try and post current horse camp pictures.

Thanks for reading and please wear your Helmet! Organ donations go up significantly in the summer months due to head injuries.

Monday, June 18, 2007 1:57 PM CDT

Laura has been feeling good all weekend and she has plenty of energy but she had to give us a good scare. Sunday morning about 5:00 a.m. she woke me up because of pain in her right shoulder. The exact same pain she had when her first liver was clotting off. (Liver problems can send a referred pain to the right shoulder.) I decided that she should go to the hospital if it persisted but it went away with some Tylenol and didn't come back.

We did call the transplant center and let them know what was going on. Her Dr. reviewed all of her recent tests, pictures and biopsy and said that everything looked all right. So Laura will be discussed at the round table meeting they have on Tuesdays. I have no idea what they'll do next.

We had labs this morning and her enzymes are slowly continuing to go down. ALT is 225 and AST is 123. Sometimes I think the only thing that elevates them is how mad she is during her blood draw.

Thank you for your prayers!

Thursday, June 14, 2007 8:49 PM CDT

Dr. Sharp himself called me this afternoon. He said that Laura's bile duct is in tact and working and also that the liver biopsy shows some kind of lesion in her liver, most likely due to obstructed blood flow. He is suspicious that her hepatic artery may be narrowing as it was unable to be seen on the MRI/MRCP from this week.

We have a doppler ultrasound scheduled for tomorrow and hopefully that will yield a concrete result. IF that's the case, her artery will need be opened with a balloon, but this is all speculation at this time.

Thanks to Marisa, Anna and Oliver waiting with us, things went well for Laura during her test on Wednesday. It looks like tomorrow will be another day of NPO until about 1:00 pm. :(

Overall she is doing well and we are obviously NOT being admitted to the hospital because Dr. Sharp doesn't feel that's necessary.

I'll update when I know something new, my fingers are crossed that we'll have resluts before the weekend.

Happy Father's Day, all you dads and Grampas! HUGS from Laura.

Early indications show there are no blockages in blood flow in any of the arteries or veins. Doctors will consult on monday, then tuesday bring Laura's issues to the round table for discussion, until then we wait.

Monday, June 11, 2007 3:52 PM CDT

I know something now. I know that Laura has her Doctors confused and confounded, leading to more tests. (They don't buy the redhead theory.)

It seems her liver biopsy looks negative for rejection that means we have to look for something else. Laura has an ultrasound scheduled for Wednesday afternoon, (that's June 13th). Apparently we are going to look for a blocked bile duct for now. Another day of NPO from 9:00 a.m. to 1 P.m., I hope I don't get bit.

Today's labs are still a little bit more elevated than Friday's: ALT 363/AST 296. I was hoping that they were starting a downward trend but that's not the case :(

Laura's Prograf (anti-rejection med) level has gone through the roof! Last week we couldn't keep it up past 3.3 and today we got a walloping 20.5! Laura takes full credit for this. She's moved from taking Prograf and Prednisone in liquid suspension to Prograf Capsules and Prednisone pills. (Prograf suspension has a reputation for causing instability in blood levels.) After starting last week and taking 3-4 minutes to gag one down, she's now swallowing pills like a champion! This means we get to reduce the Prograf dose so we can maintain a level around 5-8.

Overall, Laura is doing just terrific. She feels a bit tired sometimes but her tolerance for activity is great. She is ready to bike, shop at the mall, make cookies, go to sleepovers and have fun. I hope she doesn't bite one of these Doctors if they mess that up!

Thanks for your prayers! I'll keep you posted.

Tuesday, June 12:

Our ultrasound has been changed to an MRCP which is similar to an MRI, apparently it takes a better picture. Same day, same time.

Friday, June 8, 2007 7:48 PM CDT

We are back home where we belong. It's been a very LLLLOOOONNNGGG day of waiting for Laura. Hospitals have an insidious torture that they refer to as "NPO". NPO means you don't get any food 6 hours before your procedure. Our 2:15 procedure was promptly underway at 5:00. The biopsy went well but we won't have results until Monday. Todays labs are still elevated but no dramatic increase, ALT/AST around 250/300 and doc's couldn't find any reason for admission to Hotel Fairview.

Laura has been an absolutely wonderful trooper about this today. Thank goodness our doll, Baby, was delivered to the hospital by a paid employee. After discovering we are so out of practice at this that we left home without her.

Laura was very sad to miss part of her last day of school today. She loves school and went today until lunch.

Prednisone mood swings took control of her on Thursday when we left school early for a pre-op physical. She was so mad that she actually bit me on the arm (OUCH!) and then had a sit down strike on the front lawn of the school. I had to bribe her with a water park trip with a gaggle of girls to get her back on track.

I will post biopsy results as soon as I know them. Have a great weekend. It's nice to be home.

Tuesday, June 5, 2007 4:48 PM CDT

Things have been very quiet lately and Laura continues to do relatively well.

She was weaned off of her five milligrams of Prednisone last month decreasing one milligram at a time until it was gone, also her Prograf had come down to 4ml two times a day. Very exciting but it didn't last long.

Her labs last Friday showed that her liver enzymes were up in the 100's. Her labs were repeated on Monday and came up even higher, in the 200's and her Prograf (anti-rejection med) levels have been low. So . . . since she is not obviously sick, the transplant team has to assume that she is having a mild case of rejection. We are back to dosing Prograf three times a day and and back with our old pal, Predisone (ugh!) 10 ml once a day.

Otherwise Laura has just been feeling terrific. She got a new, blue bike and loves to ride it around town. She's been riding her favorite horsey, Paulina and generally has plenty of energy. Laura is SO excited about going to horse camp this summer and being out of school on Friday. Laura's friend Hannah, has been recovering nicely and is back at home recuperating.

As things settle down in the liver enzymes department we'll be able to decrease some of these meds. In the mean time, prayers are always appreciated.

June 6, Thursday a.m.:
Laura had labs drawn yesterday and her enzymes have gotten even higher, into the 300's. At this time we're looking at possibly having a liver biopsy which will show without a doubt if she's in rejection. Nothing is scheduled as of now, but I'm waiting to hear.

4:30 p.m.
The biopsy is scheduled for tomorrow, Friday, June 8th, 2:00. I will post results tomorrow when I get them.

Thursday, April 26, 2007 2:05 PM CDT

Laura continues to do very well! We had labs today and they look just excellent, actually very normal is how they look. Her liver is working just as it should.

Aside from a couple of nuisance virses Laura has been feeling perky and has plenty of energy, even after a full day of school. The Reglan (digestive med) she's been taking has really helped her appetite increase and we are quite pleased that she's back to her pretransplant weight of 80 pounds! Actually, 80 lbs. now is better because she's "solid Laura" at this point and not retaining abdominal fluid like she did pretransplant. Laura has the green light from her Dr. to ride her bike and participate in most everything she wants.

We were fortunate to get a Nintendo Wii for her earlier this week and she's been having so much fun with it. It's so nice to see her and older brother Jack play something together and enjoy it so much. This Wii is quite a thing. I guess I understand now why they are so hard to find. They are fun! (Especially the Cow Racing game.)

Please say a prayer for Laura's 5th grade classmate Hannah from New Brighton. Her family was in a head-on car accident while visiting Illinois, the other car driver died. Her mom, Ruth, her brother Isaac and her sister Zofia are in good condition, all hospitalized. Her dad, Don, wasn't admitted to the hospital. Hannah is in the pediatric ICU with major problems involving her liver, both kidneys and bowel lacerations. Hannah is in critical condition but has been stable since being admitted and her mom sounded very hopeful for her. Hannah's mom has requested prayers for her full recovery. Please add her and the family to any prayer list that you know of.

Thursday, March 22, 2007 8:02 PM CDT

Today was Upper GI Endoscopy day for Laura. Laura was not very excited about this, but put up with it like a trooper. This involves being sedated in the operating room and sending a thin, flexible camera down to take a look at the stomach/esophagus. Her gut Dr. ordered this to be certain that CMV virus (a post-transplant complication virus) was not causing the inflammation and protein loss in her stomach. We're happy that CMV is not the cause as her stomach lining would have noticeable "folds" in it and that would have to be treated. Her stomach is inflamed with chronic swelling most likely due to all the problems related to liver disease and transplant. Several biopsies of stomach tissue were collected to check for possible allergies. Results for those are pending.

Laura missed school today and was unhappy about that. Especially because she's going to read the 5th Grade News on TV at her school tomorrow and didn't get to practice today. After anasthesia she woke up feeling quite well, but became more nauseated in the afternoon and had to have our friend the bucket nearby.

For the time being, she'll stay on a drug called Reglan to help her stomach and it must be doing what it should, she's gained a few pounds and is back up to about 77.

Have a good weekend. IT'S GREG'S (Laura's Dad) BIRTHDAY ON SATURDAY if you have his cell number please call him and SING!

Thursday, March 22, 2007 8:02 PM CDT

Friday, March 9, 2007 7:41 PM CST

My how time flies when you get back to having a somewhat "normal" life. Laura's been going to school pretty much every day and seems to be doing well with school work. She still has a tutor coming to help her get caught up. The 5th grade ski trip was declared off limits by both the Gut and Transplant Drs. so we had an alternate trip to Mall of America that day. Laura got to buy some earrings for her newly pierced ears. The piercing had been on hold since her 10th birthday took place in the hospital. She looks so pretty with her little blue earrings!

Her liver is doing just great all the numbers are where they should be and liver-wise it just doesn't get any better than that.

There is still some kind of mysterious thing going on with her gut. Apparently she's losing too much protein rather than absorbing it. We have an endoscopy ordered for that, and that will mean sedation and looking into her esophagus/stomach with a scope. I should mention that her nuclear medicine gastric emptying scan showed her gut empties slower than it should. We have started a medicine called Reglan for that. I noticed she ate more and nausea has decreased since she's been on that.

Overall she is feeling well and her energy has increased. We did end up in urgent care at the clinic last Saturday with Laura having a double ear infection and coming home with a nice bottle of amoxicillan for 14 days but her ears are getting better.

Laura got to see two very exciting shows at the Target Center recently. One was the Lippizaner Stallions that she really enjoyed because it has horses and anything with horses is awesome. Special thanks to the FLC Young Elders for taking us. The second show was Disney Princess Wishes On Ice that was really cool, especially when they lit the ice on fire. Her favorite princess was Ariel from the Little Mermaid. Thanks to a great organization called Hope Kids we got free tickets and she had a great time.

Thanks for reading!

March 20:

It's been six months since September 19, 2006. That was the day we got called for the second liver transplant. The one that truly saved her life. I am so grateful for the grace of God in her recovery and continued health.

Laura's got an appointment to see Dr. Sharp on Wednesday and an upper GI endoscopy on Thursday, she'll be sedated and it will happen in the hospital OR day surgery unit. I'll try to get a full update on after those happen.

Tuesday, February 13, 2007 11:05 AM CST

Laura has not been feeling well lately. She's got a runny nose, cruddy cough, decreased appetite, low energy level/missing school is persistently tired and sleeping more than usual. She hasn't had a fever.

It may be something viral that she's picked up at school, but her labs show changes. Her platelet count has dropped from about 90 to 49. She's had 3 0f 5 Neupogen injections to bring her white blood cell count up and as of today it's only up to 2.1 (3.0 is needed to be out in public places) and her ANC (absolute neutrphil count) 1.2, albumin (blood protein level) has dropped down to 2.2. Liver labs look good ALT/AST (liver enzymes) 42/49 and bilrubin at .5 and we are always thankful to hear that.

We will be seeing the transplant Dr. in clinic Thursday and also her G.I. Dr. has ordered a nuclear medicine stomach emptying scan for Friday morning. Lucky Laura gets to eat scrambled eggs with radioactive "material" mixed in and a series of images over 90 minutes will show how quickly things are moving through her gut. I'm sure those eggs will taste excellent, NOT. This will probably require a very good bribe.

We are also going to complete a 3 day nutrition intake sheet, a three day hemoccult stool test (for blood) and an Alpha 1 stool culture. I'm still researching what this is for and what it will show as i did not have direct access to the Dr. when it was ordered.

Happy Valentine's Day, thanks for visiting. Please keep our friends the Hausers in your prayers as they have lost a much loved Grandma/Mother. Peace be with you.

Wednesday, February 7, 2007 10:41 AM CST

Yes! Laura got to go swimming on Friday, many thanks to her auntie Janet who got us a hotel room where she works. She spent about 6 hours in the pool Friday night and a another 4 the next morning. She was definitely wrinkled and tired. Some girlfriends slept over and we had a great time, sort of a make-up for a sucky hospital birthday.

Laura designed and added her virtual horse to the website. You can click on the "more" tab and feed an apple to her horse, paulina.

Oh, another good thing happened, I no longer have to get up midnight and give her Prograf (anti-rejection med) during the night. Her dose times are 8 a.m. and 8 p.m., 6 millilters. Things are becoming somewhat normal again, I just hope nothing ugly pops up as I'm getting spoiled with all this contentment.

Laura's been feeling well enough to go to school every day, but has missed a few days. We still have a problem with nausea and we're going to get squeezed in the ped's G.I. office this afternoon and see what Dr. Sharp thinks. Our next visit to the transplant clinic is a week from Thursday we still have weekly visits to the U of M for blood draws.

Laura has been excited to start band like the rest of the fifth graders and has chosen the trumpet. We are so lucky to hear the beautiful sound of beginner trumpet playing. It's so much better than the sound of alarms and monitors.

We are infinitely blessed. Thank you for reading. Happy Valentine's Day and hugs from Laura to all of you.

Friday, 2/9/07

I spoke too soon. Laura's blood draws from yesterday show that her white blood cell count and absolute neutrophil count are down to 1.7/0.7 and need to get back up to 3.0, the magic number. That means a series of Neupogen shots once daily for 5 days, she really doesn't like this and I can't blame her. On the plus side she's feeling better today.

Friday, January 26, 2007 9:53 AM CST

Laura was in the transplant clinic this morning and had labs drawn. We don't have the results yet, but more importantly, she got her PICC line out! Yahoo! That means no more home health care visits from nurses. No more dressing changes with that nasty tape (Tegaderm) on her upper arm. The skin was getting pretty red after all these weeks. No more huge bags of medical supplies in the dining room. No more TPN bags in the vegetable drawer in the fridge.

We'll be meeting a new Dr. at a local clinic and having labs drawn there starting next Tuesday. No more trips to the U of M transplant clinic for labs. Just monthly visits with the tranpslant Dr.

Laura has a cold this week. She's been sniffling and coughing frequently, but her temp has remained normal. She's been out of school since Monday and hopefully will be back soon.

Now that the PICC line is out she's looking forward to going swimming and having a pool party with her friends.

We're so happy! We are so blessed.

Thursday, January 18, 2007 11:30 AM CST

Laura had a wonderful time at the pancake breakfast on Sunday. The pancakes were absolutely excellent. She got to ride her favorite horse Polly, shh don't tell the Dr., we didn't exactly have permission for that. She was so happy to see so many friends (557!) who care for her all gathered in one place. The event helped her to understand how many people are supporting her even though she's spent a lot of time in a hospital room. Huge hugs and a mulititude of thanks to all who worked, ate pancakes, sent auction items and contributed.

Laura is back at school this week (her first time since fifth grade started), this is a second dream come true for her in the space of 3 days. Her white blood cell count is still in an acceptable range and she was able to go to school Tuesday and it looks like she may finish the week. She's all ready asking to go all day instead of half days and to start band.

We have a Dr. appointment this afternoon and will have a blood draw. I am hoping she can keep her Prograf level (anti-rejection med), and white count up.

Needless to say, this has been the happiest week of Laura's life! Thanks to everyone, you are a blessing.

Wednesday, January 10, 2007 6:43 PM CST

Good news, Laura is home. She was released late this afternoon. Here's what we know: her liver enzymes jumped up to 400's on Monday, the 600's on Tuesday, normal range being 0-50. Good news, today they have dropped to 400/200 (ALT/AST) and they ran out of reasons to keep her. She feels pretty good and has been walking and visiting around the hospital.

Good news, her liver biopsy did not show that the liver was in rejection. The biopsy tissue is being tested further, more results are pending.

Good news, the liver ultrasound showed that her entire digestive system looks normal with some minor inflammation. Flow to and from all veins and arteries looks great. Normal is so nice.

Her Prograf (anti-rejection med.) level for today is at 20. The ideal level to keep rejection from happening is 10. This is the first time it's ever gone this high and we've had a difficult time getting it up to 5. So we are holding Prograf until her next level can be checked and hoping that we can stop her 12:00 a.m. Prograf, fingers crossed. Good news I don't have to the set the alarm clock for midnight.

Laura has all of her Drs. befuddled with this latest series of events. She is being rechecked for Hepatitis A, B and C and her CMV levels are being monitored just to be careful. She may just have a caommon virus, but who knows. I have heard of kids having this happen without explanation:).

We didn't hear from her transplant doc today as he has been in surgery all day. He may have more to tell us if we see him tomorrow in clinic.

Laura is SO glad to be home. Thank you for your prayers and support.

Tuesday, January 9, 2007 5:59 PM CST

Very sneaky, the only way to get the biopsy done this morning was to admit her to the FUMC transplant floor. Of course it was a "23 hour admit", but that doesn't usually pan out for Laura. Like I said, I think they just like to keep her here. We are here at least overnight.

She had the biopsy this morning with anasthesia and intubation in the operating room, all went well. We are still waiting for results. Her Dr. put a rush on them but, we probably won't know until Wed. morning. The biopsy will be indicate if this is rejection. Rejection becomes more likely as she becomes stronger and is a natural response to a foreign organ. It's also very treatable.

Laura also had a doppler ultrasound this afternoon, checking the blood flow to and from her liver for clotting. Thankfully, that nightmare has been ruled out. So we'll be waiting to hear and post biopsy results tomorrow.

Overall, she's been doing very well, except for not having her favorite doll, Baby with her this morning. Needless to say, Dad was able get home quickly and bring Baby to the hospital before the biopsy.

I am asking for prayers that Laura will be able to go the pancake breakfast on Sunday morning. She has been hospitalized for her birthday then Halloween and Christmas, God willing, she can be at the breakfast. She needs this, thanks to you all who have donated, planned and prayed.

Sunday, January 7, 2007 5:41 PM CST

Laura is continuing to improve. Her endurance for daily activity has increased by leaps and bounds. She is able to tolerate much more than when she was released from the hospital on December 26.

The only thing that still holds her back is the white blood cell count. It is currently about 1.3. 4.0-11.0 is the normal range. A low white blood cell count means she can't fight off viruses and infections and must wash her hands frequently. No returning to school until that comes up.

TPN is still a fact of life. TPN is the IV fluids she gets nightly through the PICC line (vein access) in her arm. It provides fat, 1100 calories, vitamins, minerals, etc. When she gets back to about 80 lbs. that will gradually decrease. She was back to about 76 lbs. before re-entering the hospital but the last 2 weeks she's gotten skinny again.

As far as labs go, most everthing else looks good. her liver enzymes, ALT/AST elevated up to 102/117, not sure why. A little bit high, but not alarming. Bilirubin is 1.2 and that's still good.

We have dropped a few meds from the heap we came from the hsopital with. No more IV antibiotics, no more Diltiazem (to lower blood pressure), Immodium is gone and Ursodiol (Actigall) is on hold. It's kind of strange to be holding that one as I have been giving it to her for the last 7 years.

Laura is VERY excited about the pancake breakfast this coming Sunday at our church. I pray she can stay well and feels up to tolerating the day. The fact that it takes place early is in her favor. She's also looking forward to riding her favorite horse, Pollina! Excited to the point where she can't wear a dress, she has to wear riding boots and jeans.

Thanks in advance to all you earthly angels who have participated and contributed to Laura's breakfast. You have carried Laura and our family through very difficult times. This feels like the light at the end of a long, dark tunnel. Blessings to you all in 2007.

1/8/07
Laura's labs show that her liver enzymes have made a large jump into the 400's and she will having a liver biopsy tomorrow morning. Prayers.

Thursday, December 28, 2006 5:43 PM CST

Laura had a clinic appointment today and it was all good. Her liver enzymes are back in the normal level after hovering around the 100's for the last month, bilirubin is .8. Her white count is still low at 1.1, and should be up to 4. The chest fluid level hasn't increased so no tapping is necessary, and she will be x-rayed again next week.

She's been in a very good mood all day (with the exception of getting her hair brushed) and felt good enough to stop at Target on the way home and get a new game for Nintendo DS.

Please say a prayer for our friends Ron and Lisa as they mourn the loss of their 17 year old son.

Thanks for visiting we welcome everyone's support.

Tuesday, December 26, 2006 5:55 PM CST

Laura's temperature rose to 103 degrees by late afternoon yesterday. After receiving one dose of IV anti-biotics, the temp came down to 97 this morning. Most of her other symptoms have cleared up also. Her chest has fluid in it but not enough to tap and drain.

We are going to be discharged tonight after she receives another Neupogen shot to increase her white count, some blood product to raise her hemoglobin which has dropped, and more IV anti-biotics.

Antibiotics will continue over the course of this week either at home or in the transplant clinic and hopefully she will continue to get better.

Monday, December 25, 2006 1:22 PM CST

Things got a little too exciting early this morning. Laura had a return of vomiting and diarrhea starting late last night. Early this morning her temp went up to 101, so that means a Christmas Morning ER visit. Of course she was admitted and sent up to transplant.

At this point her Doc thinks that the oral antibiotic used to treat her gut infection wasn't strong enough. So it looks like we have a case of infection and she needs IV antibiotics for a while. I'll hear later today about results of her chest x-ray and her abdominal bloating as doc's are looking at those.

I did tuck a Christmas present (Nintendo DS with a Nintendo Dogs game) in my purse this morning to open in her room and she loved that. And Santa brought her a Baby Alive just like she wanted. Baby Alive has already been fed and done her "business" to Laura's delight.

Laura's wonderful Dad used his dump truck to haul three loads of snow into our yard yesterday and delight her with a White Christmas! Dad loves his girl.

While this isn't an ideal situation, most transplant recipients have complications for the first year or so. It's part of the deal.

We are blessed. Merry Christmas!
Please keep our two donor families in your prayers.

Sunday, December 24, 2006 12:00 AM CST

Yes! To my surprise Laura was released yesterday afternoon. After seeing her chest x-ray things looked a bit doubtful as some fluid has reaccumulated in her chest. The surgery fellow thought that she would need to stay and be hooked up to a chest draining unit but her transplant Dr. said he was not worried and *if* Laura was comfortable she could go home and then be seen and reevaluated in the transplant clinic procedure room on Tuesday morning. Guess what Laura chose.

Overall her temperature has been about 98-99, she has some fluid in her abdomen and it's a bit distended. Nausea and diarrhea are back, it looks like she may have c-diff going on again. She hasn't needed any pain meds since yesterday morning.

She had her last Neupogen shot for this series yesterday before discharge. We have some new meds Amoxicllan Clavulinate for gut infection due to the post t-tube removal bile leak. Diltiazem to lower her blood pressure and heart rate and help her absorb Prograf (anti-rejection med) better. Lasix a diuretic to get rid of some gut and chest fluid.

We are so thankful to be home, and also for all the kindness and support shown to us by friends and family. Giant hugs to all of you.

Merry Christmas, from Laura!

Thursday, December 21, 2006 6:14 PM CST

Laura had her t-tube removed this morning and is currently having some complications with that. Shortly after the procedure she began vomiting, having abdominal pain and getting very warm. She stayed at the clinic this afternoon so her Dr. could watch her. By 4:00 she wasn't feeling any better and she is currently admitted to the hospital.

It sounds like pulling the t-tube out of her liver made some bile leak into her gut and that's making her sick. She has started on antibiotics to prevent infection. Hopefully she will be home soon.

Friday 11:30 a.m.

Laura had a very difficult evening, it was full of gastrointestinal upsets, bad ones, (I'll spare you the details) vomiting, fevers as high as 102.4.

I'm extremely glad to tell you things have settled down through the night and morning. Her belly is still very tender and her temp is in the 99-100 area. It appears that the worst is behind her. Her doc thinks she can go home tonight or tomorrow. Dr. Mom thinks tomorrow is more likely as I saw how much fluid she lost, and I know she's not eating.

Laura's mood is improving and she's happy to have her favorite nurse, Alethea, taking care of her.

Saturday 12/23
Christmas came early, Laura is home! I'll post the details tomorrow.

Thanks for your prayers and support!

Friday, December 15, 2006 11:09 AM CST

On Monday we found out that Laura has tested positive for CMV, a virus that behaves similarly to mono in that it can make her tired easily, runny nose, gut upsets, etc. She probably will not be back in school until after the New Year because of CMV and low white counts. Laura's not happy about this, but we can certainly have friends over during break. CMV is a normal, treatable post-transplant complication for some transplant patients. While it's not great news, it's not totally suprising, either.

Yesterday she started 2 weeks of IV Gancyclovir in the procedure room at the transplant clinic to treat CMV. We are able to administer this at home and has to be done IV in her PICC line every 12 hours. Her white count and immuno-suppression (anti-rejection) are being closely monitored, she may need another round of Neupogen injections. Her liver enzymes and bilirubin have notched upward but only just over the high range of normal.

Her T tube (a tube put in during transplant that drains excess bile to a bag on the outside of the body) is scheduled to come out next Thursday, an early Christmas present. We also dropped one of our least favorite medicines, Nystatin, an anti-fungal for oral yeast that has to be swished in the mouth 4 times per day.

Her chest has not filled up with fluid after having the chest tube out last Saturday. Her lung capacity is still diminished on the right side, but shows improvement.

Things are slowly moving back to normal, her appetite is improving, and so is her energy level. Her gut seems to have settled down a little bit. She wants to sing in the Christmas concert with the choir on Sunday, prayers for that.

Laura's very excited about Christmas. We are so blessed, Merry Christmas!

Saturday, December 9, 2006 7:25 PM CST

On Wednesday we were lucky enough to get an appointment with her gut Dr. I wanted to discuss gut issues with a gut Dr. not a transplant Dr.: nausea, vomiting and loose stools have been going on for too long. Also to see if he has a clue about why she can't keep her Prograf (anti-rejection med) levels closer to a normal range. Laura is still needing a midnight dose of Prograf. Dr. Sharp ordered a CT scan of her abdomen and a re-check for c-diff (gut infection). Those were done Friday, I don't have those results as of today.

On top of that she had a chest x-ray. Miss Laura's chest tube has decreased it's output considerably this week meaning one of two things, it's blocked or she's done putting out fluid after 6 weeks of draining, draining, draining.

We had a procedure this morning today at the hospital. Radiology thought that her chest tube had shifted inside her and was resting in soft tissue rather than in a cavity where it can drain. We went in thinking that the tube would be repositioned, as in just moved around so it can flow again. After looking at the scan, the x-rays and consulting with her transplant doc, they decided to drain what fluid was left and pull the chest tube completely out. The remaining fluid came to 470 ml.

What a nice surprise. No more chest tube. Now we will have to keep a close eye on her lung to make certain it doesn't fill right up again, putting us back in the hospital. Also Laura has to work on her lung rehab to get that lung inflated all the way to the bottom.

The t-tube, which was placed in her abdomen at transplant to drain excess bile, is due to be removed December 19. After that she will still have an IV access line in her arm (PICC) in place for nightly TPN as long as she needs IV fluids and nutrition. She gets about 1100 calories while she sleeps at night.

Her labs still look good, ALT/AST are about 60, bilirubin is 1.1. White blood cells are 2.8, down from 3.0. This is low and because it affects her immune system, it's enough to keep her out of school.

Overall this week she's doing better. She went to Mall of America and spent a few hours there. We have reintroduced milk at the advice of Dr. Sharp (gut) and she's not having any problem with lactose intolerance. So she can drink regular milk rather than "stupid milk" (lactose free) and have her favorite ice cream: Coldstone cheesecake with peanut butter cups.

Laura did pretty well with the procedure today and was asleep the entire time. She's excited about Christmas.

Please remember our two donor families in your prayers.

Monday, December 4, 2006 11:46 AM CST

Woops, I've been caught slacking here. Here's your latest Laura update:

She saw her transplant Doc on Thursday, her white count was low, she has a cold sore, and she had to get a series of three Neupogen(sp?) shots in the arm, one per day to stimulate white blood cell production. She was pretty upset about this news when we were at the clinc. After all the things that have happened to her, this shot business just got her goat and we had an all out crying scene.

She's still fatiguing easily and gets very tired from activity. Vomiting is still going on a couple of times per week, but I don't "run for the bucket" as often as I used to, stools are still loose. I think we may have to look at the extent of her lactose intolerance more closely and also re-check to see if her gut infection is gone. Her weight is about where 70 lbs. and she's not gaining, she may have even lost a pound. That means IV fluids/nutrition (TPN)at home will still be happening for at least another 2 weeks.

Laura is really looking forward to getting her t-tube out on Dec. 19, 3 months after surgery, as scheduled. She is using her incentive spirometer for lung rehab every hour and setting a timer to keep herself on track. She is hoping that *maybe* the chest tube can come out on the 19th also and being able to swim or take a "whole bath".

A good, old bath would be a wonderful Christmas present! Please say a prayer for her, to put some fat on and get rid of some of these things.

Thanks, enjoy the season!

Thursday, November 23, 2006 9:52 AM CST

We have so much to be thankful for today. It's wonderful to have Laura at home and recovering every day. Even though it's been a bumpy road she is in a much better place than early September when were waiting for that call to be transplanted. The whole staff of the Pediatric ICU was overjoyed when they found out she was getting her gift of life.

I think everyone who knows Laura was overjoyed. So many people (family, friends, hospital staff, school staff and strangers) have been absolutley here for us when we needed them. God has been here for us through thick and thin and walked us through the valley of shadows. Our church family has been supportive and gone more than an extra mile for Laura.

I am so eternally thankful to our donor families today. They have made the rest of Laura's life possible. Please remember them in your prayers. They are our heroes, and they have been generous at a difficult time in their lives.

THANK YOU, may God's blessings be poured down upon you.

Friday, November 17, 2006 5:05 PM CST

At Laura's Transplant Clinic visit yesterday we found out she has tested positive for Epstein Barr Virus. This is a virus in the mono family that was probably existing in the new liver she received. While it's not great news, it's not an unusual complication post-transplant. She doesn't appear to be having a lot of symptoms with it.

We're just hoping to stay well for Thanksgiving on Thursday.

Saturday, November 11, 2006 4:51 PM CST

Laura's visit to the transplant clinic was on Thursday and her new liver is continuing function well. Her bilirubin is within the normal range at .6, her ALT/AST are 39 and 44.

We are still having problems keeping her Prograf (anti-rejection med)levels up to around where they should be in her bloodstream. Her dose is up to 6 ml every 8 hours and she's still getting one at midnight. I am hoping this will correct itself after the bacterial infection in her gut clears up. Today was her last dose of Flagyl for that.

We also had two other meds discontinued, at least for this week. Her white blood cell count has dropped pretty low (1.6) and the two post-transplant anti-viral/infective drugs she is taking, Bactrim and Valcyte can cause this. They are both very yucky and it's nice to have a little break from them.

Overall, Laura's had a pretty good week, she wanted to go clothes shopping on Friday and picked out a pretty red dress for Christmas. She had a short piano lesson and two tutoring sessions to catch up on 5th grade. She lost TWO teeth and got paper money from the Tooth Fairy!

She still gets tired easily and is on a lot of meds. We are still working on strenghtening her lung. The fluid build up in her chest hasn't reaccumulated to the point where anything needs to be done. Her excellent nurse, Dad, is keeping an eye on it with his trusty stethoscope. Her food intake has doubled this past week and that will help so much with all the issues she's been dealing with.

Please say a prayer for the family listed below, a little boy lost his fight with liver disease today.

Tuesday, November 7, 2006 10:15 AM CST

We are still at home! Laura's chest tube is draining nicely and she hasn't been having any breathing difficulties. This morning the fluid has changed in color from yellow to red, it may be finishing.

We had a routine check up with her primary care Dr. yesterday and we decided to x-ray her chest as long as we were in. She still has a partially collapsed lung but it's much better than before and working at about 70 per cent. She's been working hard at using her spirometer to rehab her lung capacity.

She still has issues with nausea, vomiting and diarrhea. I am beginning to suspect that she may have some kind of secondary lactose intolerance as her bowl of Wheaties caused several "episodes" yesterday. Her doc tells me this wouldn't be unusual. We can try to reintroduce milk later on. It will be challenging trying to feed her now. Dairy products were half of her food intake, but we'll find something, maybe a Pringles diet.

Her labs continue to look great. With two exceptions, her Prograf (anti-rejection med) is jumping around and her blood sugar has come up low two draws in a row. So, I'm sure I'll hear more about that. We'll see the transplant Doc on Thursday.

Laura is looking better than she has in a long time and her energy and sense of humor are returning. It's so nice to have our girl back again! She is a gift.

Wednesday, November 1, 2006 7:01 PM CST

Two things to celebrate: 1.We are home once again, 2. Laura's liver functions are in THE NORMAL RANGE!!!!. For the first time in many years possibly in her life. ALT 50, AST 54, and bilirubin 1.2

Laura was sprung early this afternoon and we wasted no time leaving.

She is going home with a medicine (Flagyl) for a bacterial infection called c. diff. After several negative test results one finally came up positive. I am hoping her gut will settle down and she'll be able to put a little weight back on. Of course we can't stop IV fluids overnight at home.

She still has a chest tube in, it's draining like it should. Dad was taught by the nurse today how to use his new stethescope and listen to her breating sounds. Should they sound diminshed she'll have to go back in and have some more fluid drained. It turns out that she can hold quite a bit in her little body. About 4 liters of fluid came out of her chest in 2.5 days. Oddly enough, she can maintain a decent oxygen level with a collapsed lung. What a trooper!

I should clarify that this isn't pneumonia. It's not in her lungs, but in the area surrounding them.

Laura was pretty sad last night about not going out for Halloween but we'll have to do something fabulous to make up for it.

I hope we get stay home for a while. A real long while.
Thanks for your prayers and continued support.

Tuesday, October 31, 2006 12:40 AM CST

Hospital Halloween! Yes, Laura was readmitted yesterday due to some difficulty breathing. Her chest drained out 1800 ml of fluid and her lung was collapsed again.

The deal yesterday was that she'd be out this afternoon but that's not going to happen. Because her chest tube didn't drain as it should have at home, she's going to have a medicine flushed through it that will prevent any clotting in there. This has to happen three times, 8 hours apart in 24 hours, that means Hospital Halloween.

Also she has finally tested positive for a bacterial infection called C-Diff. C-Diff is common in people that have antibiotic treatments for long periods of time and it gets passed around in the hospital. That will add another medicine for her but just for a short time. This will also give me an answer to some of her gastrointestinal upsets.

She has her costume at the hospital all ready because she went to a party there last night. This afternoon there's another one on Ped's, and she can go from floor to floor getting candy from the staff.

I'm sad she has to miss regular trick-or-treating, but it looks temps will be in the 30's and her costume (angel/devil) would be covered with a winter jacket. On top of that she gets exhausted so easily.

She was disappointed this morning, but she's looking forward to alternate activities.

Saturday, October 28, 2006 9:13 AM CDT

We are still at home and I'm so glad she's doing well. We still have daily bouts with nausea and vomiting but it has decreased dramatically since she stopped taking a med called Cellcept.

Laura is very excited about Halloween and she has a costume that's half angel (all white on the right side) and half devil (all red on the left side). She looks so darned cute in it. I don't know how much trick-or-treating she'll do, but she will do some.

Her weight is down to about 74 pounds (her height is about 4'9"). That's down from 84 pounds back in January of this year. It's still hard for her to eat very much and she has a lot of apprehension about throwing it all up. Cheesecake, Blizzards and french fries are encouraged. We won't be stopping IV fluids and nutrition (TPN) at home this week until she's a bit stronger.

Before we left the hospital Laura lost a tooth! She was eating a Tootsie Roll and it popped right out. A big molar, and it's a good thing she went home that night because the Tooth Fairy delivered a double dose of quarters and a new "My Secret Unicorn" book.

She got through her first day of home tutoring yesterday and went for a full hour. She did just terrific and was able to recall her math computations quite well. Poor Laura hasn't been to a single day of school (5th grade) yet this year, and she's one of those kids that love's school.

Her next Dr. appointment is at the transplant clinic on Thursday. If her liver keeps on like it is, we may actually be in the normal range for liver function next week.

We got to take two meds off of list this week. We lost Lasix (diuretic) and Cellcept (anti-rejction). She will be taking Prograf and Prednisone for anti-rejection. Her Prograf levels have been low so we have to give her 3 doses, rather than 2 and they must be 8 hours apart. Meaning, we dose at 8:00 a.m., 4:00 p.m. and set the clock before bed for a midnight dose. I hope this is temporary, her labs will tell us next week.

Happy Halloween! :)

Wednesday, October 25, 2006 5:34 PM CDT

We are home again!

Laura got some fluids overnight and some albumin today and yesterday. We will still do TPN at home (IV fluids).

Her bilirubin is 2.1 and the normal range for bili is .02 to 1.3. That has crept down from 14. Her liver enzymes continued downward also with ALT at 65 and AST 55. Those were in 1000's.

She gave a giant barrel of cheese balls to the staff on 5C (Ped's ICU) and 6B (Transplant) for a going away present today.

She's glad to be out and wanted some McDonald's on the way home. Apparently Happy Meals are better than hospital food.

Please check the caring bridge site for Jackson Riley, listed below. He's in a very similar situation to where Laura was only a few weeks ago.

Tuesday, October 24, 2006 1:42 PM CDT

We are not going home today. Apparently when a Dr. says "a couple of days" he means 3 .

Laura has stopped throwing up and has eaten quite a bit of of food in the last 24 hours. Actually more than she has eaten all week. Today and last night she had a little episode of nausea. Her vitals are good, her liver numbers are better than yesterday.

Her transplant Doc's have stopped her Cellcept and she's getting Prograf and Prednisone for anti-rejection meds. Cellcept has a reputation for causing nasuea/vomiting.

She had her bile bag capped off today so she no longer has that external bag hanging on her. Yay! She also had her chest tube attached to a small bag rather than the suction machine that draws fluid out. Gravity should be able to draw it out for her. This will be more portable and will allow her to drain as needed rather than having a procedure.

The fluid retention will slow down after she begins to eat and raises her albumin levels. An increase in albumin will keep her fluids from leaking out of the vascular structure and into places where they don't belong.

Thanks for checking on her, she's so sweet.

Sunday, October 22, 2006 2:48 PM CDT

Laura is back in the hospital. She was admitted in the ER this morning after a nasty round of vomiting and diarrhea that started about 4:30 a.m.

She's mainly in for dehydration right now. Her blood work shows she's dehydrated and her x-rays look good. She doesn't have a fever but this could be a virus or some type of reaction to meds.

Her liver is doing just fine. We just have to figure what this little quirk is. It sounds like we'll be in for a couple of days.

She's in a good mood and comfortable.

10/23
Laura had about 600 cc's of fluid drained out of her chest late last night. Her right lung was close to being fully collapsed. Needless to say her breathing is easier. I can't believe that she could keep her oxygen levels at about 96ith that going on, but kids can compensate with rapid breathing. They also left a very tiny, flexible chest tube inside of her so that she can be drained as needed in the future.

Amazingly, her liver labs look even better than last week. The vomiting and diarrhea have stopped at least for now.

No word as to when we're out.

Friday, October 20, 2006 5:43 PM CDT

I don't know how an entire week went by! I guess we've been busy getting things back to somewhat normal.

Laura has had problems with nausea and vomiting this week. We are adjusting the doses of one of her anti-rejection meds to try and take care of it. About six of the medicines she's on list nausea and vomiting as side effects. With some luck we'll get things straightened out.

Her daily med's are as follows:
Anti-Rejection
Cellcept, 250 mg 2 x per day
Prograf, 1 mg 2 x per day
Prednisone 5mg 1 x per day

Anti-Viral
Nystatin, 4 x per day
Bactrim, 80 mg, 10ml 1 x per day
Valcyte, 450 mg, 5ml 1 x per day

Anti-Ulcer
Prevacid Solutabs 15mg 2 x per day

Aspirin, 81 mg 1 xp er day, as a blood thinner
Lasix 10mg, .5ml 2 x per day, diuretic
Actigall 300 mg, 12ml 2 x per day, stimulates bile production in the liver
Levoxythyrine 50mcg, 1 tablet per day
Zofran 4mg 3 x per day for nausea.

Prograf and Cellcept must be taken on schedule 12 hours apart and must be repeated if vomited.

We have a home health care nurse coming three times a week to draw her blood for labs and her Prograf levels have to be monitored and adjusted by her transplant coordinator.

Greg (Dad) has done absolutely fantastic job with Laura's TPN every night. He injects the vitamins into the fluid bag, gets all the tubing attached, gets the pump running and prepares the heparin and saline for flushing her PICC IV line. Laura is so lucky that he's a much better nurse than I am.

Laura has been seen by her transplant Dr. weekly since coming home. And today we also saw her thyroid Dr. Good news about the hypothyroidism, it looks like it's temporary due to her being sick for so long. It will probably return to normal soon and we can cross one medicine off of our list.

Today Laura also had her JP (for fluid dainage in abdomen) removed as it hasn't sent out any fluid for 4 days. After that got pulled out, about 400 ml of fluid drained out of the tiny opening in her skin that was left. That was just today. I am hoping that this will drain some more as her belly is bloated due to abdominal fluid retention and it appears the JP was blocked somewhere.

Her chest cavity has not refilled with fluid after being tapped last Friday. It may still have to be tapped again if that happens.

Her liver is still working toward normal. Her bilirubin is again this week at an all time low of 3.2 and closing in on that "normal range" of .2-1.3. Her liver enzymes have moved into the 80's and closer to the their "normal range" in the 50's. All her other labs look alright.

It looks like Laura and her liver are working together very nicely.

Monday, October 16, 2006 4:33 PM CDT

Laura had about one liter of fluid drained out of her chest cavity on Friday. That's quite a bit for her little body. Almost immediately after it was drained her color looked a little pinker and she felt quite a bit better. Her breathing was much easier.

She also started a mild diuretic to decrease some of the fluid that's accumulating in her gut.

Her labs look just great. The ALT/AST (liver enzymes) are still in the 90's but that's down from 100's and her bilirubin is at 4.4, an all time low for this liver.

She's had some trouble with nasuea and vomiting. We're going to try splitting some doses of her meds up and giving a half dose at a time.

We're still on TPN at night, that's IV fluids and nutrition at least for the remainder of this week.

Saturday, October 7, 2006 2:00 PM CDT

I am home now
Love Laura

10/12/06
I still can't move that message from Laura to the back pages. It makes me too happy.

She's getting a tiny bit better every day. She took a trip to our brand new Super Target yesterday and fixed herself up with some Littlest Pet Shop critters she didn't have.

Her liver numbers are still doing all right and her bili is down in the 6's. Her vitals are in the normal range and she's taking her own blood pressure and changing her own dressings. She might be a nurse when she get's big.

We are still hooking her up to IV fluids and nutrition (fat and vitamins) overnight to keep her from getting too skinny or too dehydrated.

Today is our first visit at the transplant clinic. We're hoping she'll be done with the IV fluids soon. Her tummy seems to be holding some fluid, but not enough to send us back to the hospital. Her t-tube and JP fluids have decreased to very small amounts.

She is still so tired and weak, but doing well and happy to be home.

10/09/06

Yes, Laura's been home since Saturday and we are doing all right. I just couldn't move her message to the next page, it's just too cute.

The home health care nurses have been over everyday and we've had quite an intense learning session. Laura needs to have IV fluids with fat and vitamins added for 12 hours every night. She also needs heparin and saline flushes in her PICC line.

She likes being home and sleeping in her bed at night. She does pretty well about sleeping most of the night. We haven't had any middle of the night incidents flare up and I am so grateful for that.

Today was her first blood draw from home and her bilirubin is still creeping down, we always like that.

She had some pain her in gut today on the left side, the spleen side. She also looked a bit bigger around the tummy and may be hanging to some fluid. Of course I had to call the transplant team about this, but since we don't have a fever and labs aren't reflecting anything bad, they decided we can sit tight until our scheduled visit later this week.

She is still tired and quiet and skinny, but it's so good to see her smile and pick on her brother. We may start some at home tutoring through school this week.

Wow, I can't believe our little site has been visited 11,000 times!

Thanks everyone for everything you all have done. (There's a quotable quote for ya!)

Friday, October 6, 2006 3:19 PM CDT

I think Laura's Drs. are too attached to her to let go. She can't come home today, but she will soon.

Her liver enzymes and her bilirubin crept up slightly overnight, so she's going to stay at the hospital in order to get her anti-rejection drugs adjusted to where her liver is happy with them.

She also has a little bit of fluid accumulating in her lungs. Not enough to tap or put a drain in but just enough to watch. She was more comfortable sleeping with her oxygen on last night.

As much as I would like to take her home, I really don't want to wind up making an emergency visit to the hospital during the night. (Things like that always seem to happen at night.)

All that aside, she's doing quite well and walking down to the afternoon acitvities on the ped's floor. Her food intake has doubled and she can drink milk without vomiting.

Have a good weekend.

Thursday, October 5, 2006 4:06 PM CDT

We have a possible release date of tomorrow! It looks like things are going well enough that the hospital can part with Laura.

Now that she's had some tubing removed she is excited to leave. Before, she had some apprehension about going home due to getting tubes and drains pulled out. Her fluid retention hasn't crept up and her lungs and oxygen level are still good.

She has started meds for her thyroid being underactive. We are going to go home with about 10 different meds for various things, but they will gradually taper as time goes by. We will also have home health care visits from a nurse so we can deal with giving her some IV fluids at home.

The liver numbers still look good and her bilirubin is still moving lower.

I am praying nothing happens to change our course. There's no place like home.

Wednesday, October 4, 2006 6:25 PM CDT

Yes, Laura got her "sleepy juice" this morning and had several items removed. The JP abdomen drain, the chest tube, the hickman in her chest and the line in her neck were all removed. On the other hand in went a PICC line that she'll use for blood draws and nutrition replacement.

She's lost about 10 pounds of mostly water/fluid which has been draining out. Her tummy is much smaller. Her color is still kind of yellow.

She's doing well today. It's so much easier for her to move around. No more IV pole to drag behind her and no more chest tube drain box to haul. I'm also hoping her pain will subside, I've been told the chest tubes are painful to have in.

We are still hoping for a possible release time at the end of this week.

The liver is still doing great. And I am so thankful.

Tuesday, October 3, 2006 5:20 PM CDT

Laura is continuing to make progress. She is getting stronger and more active. Her pain and nausea seem to be subsiding.

She is going to have drain tubes from her chest and gut pulled out tomorrow morning. She has chosen to be mildly anesthetized during this process as she found it painful the after her first surgery.

Her temp was slightly elevated overnight and she's had some blood cultures done to rule out infection from her IV lines. Those may get pulled tomorrow too. She has one in her neck and one in her chest. This would mean all oral meds rather injected.

Laura's thyroid function is being looked at. Her transplant Dr. said it may just be low due to bodily stress, but he asked the ped's thyroid Doc (I forgot the offical name) to check her out. I am hoping this won't become an issue.

No definite discharge date yet, but we are inching closer.

I hope the Twins can be like Laura and make a huge comeback.

Monday, October 2, 2006 6:37 PM CDT

I might sound like a broken record but Laura is getting noticeably better by the day. She went outside in a wheelchair again today and took another nice long walk to the nurses station.

Her fluid drainage is starting to come down and we are hoping to take out the chest tube and an abdominal fluid drain (JP) on the left side. That would be Wednesday if all goes well. She will be able to move around so much easier without those.

The liver is doing just what it should be and her bile is looking better and better.

At this time we are still looking at her being released to go home late this week. She will still need some IV nutrition replacement for a while and we'll need some kind of nursing help with that.

All things work together for good.

Sunday, October 1, 2006 3:59 PM CDT

Just a quick note to let you know we have a possible release date of late this week.

Laura is continuing with her physical therapy and has made great progress in just a few days. She walked all the way around the nurses station today and yesterday.

It looks like her fluid level is evening out and may be on the way back to normal. Her tummy looks smaller and she weighs less.

The liver is behaving itself and I am so glad. Laura's keeping me busy and that's good.

Friday, September 29, 2006 7:06 PM CDT

Yes! Laura did get moved discharged from Ped's ICU and sent up to the tranpslant floor late yesterday. She lost quite a few of the lines that she had for injectable meds but she is not free of them all. She only wears oxygen at night for a few hours when she's sleeping and still has two tummy fluid drains (JP's) and a chest tube drain.

She was not excited about leaving ICU but all things considered it is a good move. ICU can be very busy and very dramatic and I am so glad to be out of there. Mostly because I wasn't allowed to sleep in her room. I told her now we can have sleepovers together, she rolled her eyes at me.

We are still working on handling her pain. It is quite bad at times due to the fluid that accumulates and drains in her gut and chest. This is not unusual for transplant patients. Her Drs. don't know how long this will keep on, it could be as long as month, but we hope not.

Physical and Occupational therapy are very difficult for her and she has to get pushed and prodded into sitting and standing. Her tummy aches from sitting and her back aches from laying in bed, it's hard to find any physical comfort but the best thing to help her along is activity but she gets pretty mad at us.

She has big problems with nasusea and vomiting especially after eating. She just isn't used to eating any more, but she had some crackers today and kept them down thanks to nausea meds.

But! On the plus side, her little liver is working just great, her bilirubin continues to drop and her liver functions are still creeping into the normal range. Physically she looks much better.

I am still thankful to both of our donor families. Please continue to pray them in their time of loss.

Thursday, September 28, 2006 10:36 AM CDT

We have some very happy news, Laura's getting moved from Ped's ICU to the transplant floor. Her Drs. feel she is doing well enough that she doesn't need a 24 hour nurse assigned to her, which is what you get in ICU.

She is off of oxygen during the day and may need some at night. Her transplant doc's also feel comfortable with checking on her doppler periodically rather than 24/7. The doppler is inserted on top of her hepatic artery to monitor blood flow. This is to make sure that the new liver doesn't clot off it's blood supply.

This is good.

Wednesday, September 27, 2006 12:16 AM CDT

Once again Laura's liver numbers are doing well and her enzymes may be close to falling in the "normal range" in a day or so and INR is good. Her bilirubin went up a point, but her docs have assured me it's nothing to be alarmed about.

She's had a rough morning with nausea, vomiting, physical therapy and standing up to be weighed. She will be getting nausea meds consistently before her other oral meds to prevent nausea and vomiting.

Otherwise, there is nothing big that we have to worry about today, no tests, no scans and her daily chest x-ray was good. She just needs to rest and get stronger. Pain is still an issue.

Our nurses and staff have been so good to her. I am so thankful for them.

She's being so big about everything.

Tuesday, September 26, 2006 7:01 PM CDT

Laura is doing much better today! I made several tries to get on a computer today but they were either in use or disfunctional.

Her CT scan from yesterday didn't show that anything major was wrong. We did find out that she has an inflamed bowel and a partially collapsed lung due to fluid build up in her chest and abdomen. She currently has a chest tube draining the fluid and eventually the lung will heal itself.

She ate some banana, blue popsicle and jello and walked a few steps. (I had to let each visitng staff memeber know that her lips were blue from popsicle and not her oxygen level.) She's also slowly being weaned off of oxygen and had a peripheral IV line in her arm removed. We are down from about 10 medicine pumps on three IV poles to just one pole, it still has a lot of stuff on it though. We're not leaving Ped's ICU soon.

Her liver is normalizing it's functions and her enzyme levels (ALT and AST) are still dropping down from the 3000's into the 100's. Her bilirubin is coming down just a teeny bit every day and I am told bili is usually the last thing to come down, she still looks jaundiced because of that.

Her pain meds have been changed after consulting with the pain Drs. yesterday. She seems a bit more comfortable today.

I am cautiously optimisitic and very relived that we are dealing with small things and not big things.

She is a blessing and so are all of you, thank you for reading.

Monday, September 25, 2006 10:25 AM CDT

We didn't have any procedures last night. Laura's maintained her oxygen levels but she's still draining quite a bit of fluid. Her transplant Dr. has ordered a CT scan this morning in hopes that we can find what's causing her on-going pain issues.

She also had some slightly green drainge coming out of her right side in her JP it's possible she has a very small bile leak, but not large enough to need repair. I am beginning to wonder if she has an infarct in her spleen. That's when a bit of spleen tissue doesn't get adequate blood supply and dies. She's had this before, it causes pain, and it cleared up on it's own without treatment. The CT scan will hopefully shed some light on this.

The good news is that her liver is continuing to do well. In spite of the pain meds, she has been a little more active and interested.

I am hoping we will get some kind of answer to the pain questions today.

Sunday, September 24, 2006 12:33 AM CDT

Laura is having a good day and a bad day.

The good part is that her liver numbers are still coming down very nicely and that it seems to be working well.

The bad part is that she's in quite a bit of pain and we are consulting with the pain specialist team about optimizing her meds.

Also her pulse and blood pressure have crept up a bit. This could be due to the pain. There is nothing obvious causing it, but her Drs. are watching her very closely. Her transplant surgeon has mentioned that he may want to remove some blood that has pooled at the top of her liver. He's going to see how she does today and make that decision this afternoon. This would be a somewhat invasive procedure but not nearly as much as a transplant.

She had more fluid drained from around her lungs (not in her lungs, she doesn't have pneumonia) and had a drain tube inserted to keep it clear.

All of her x-rays and ultra-sounds have looked good.

Saturday, September 23, 2006 6:10 PM CDT

Laura's liver enzymes have dropped by 50% in the last 24 hours and this is good. Bilirubin is dropping, but she is a bit "tan" looking from jaundice.

It looks like things are trending toward normal. She got her nasal feeding tube out today and she can have water today and maybe clear liquids tomorrow. She got out of bed and stood a couple of times today.

She is still very, very weak and very tired. She seems to be moving toward getting better but she's not moving out of Ped's ICU anytime soon.

Thank you all for thinking about her.

Friday, September 22, 2006 7:33 AM CDT

I am so happy to tell you that Laura's liver enzymes have dropped by about a 1000. They are in the 2000's now are hopefully trending downward and will settle down. This is not rejection, by the way. It is a case of the liver not starting up as quickly as we'd like.

She has lost a good amount of fluid and if she keeps doing that perhaps she can get off of the respirator. Yesterday she had some fluid around her lungs but not in them and extubating could have caused her to work much harder to breathe.

Her transplant Doc has started her on medicine called prostaglandins in an attempt to get that liver working faster. This treatment usually is used for pediatric heart patients, and is experimental for liver patients and also won't do any harm.

I hope all will continue to improve.

THANK YOU for all your prayers.

Thursday, September 21, 2006 11:58 AM CDT

Laura's liver is not doing well. Her liver enzymes are very high (ALT and AST in the thousands), her kidneys aren't working as efficiently as we would like. Kidney doc's are working on reviewing this and can hopefully stimulate her urine flow.

For reasons we don't know her liver does not appear to be functioning at this time. But also her doc's are hoping this trend will correct itself soon. For the time being her Dr.'s are keeping a very close eye on her and are waiting.

She is comfortable and sedated.

Please once again, say a prayer for the little red-head.

8:40 p.m. Laura's kidney dr. was in. He doesn't feel that he wants to change anything at this time. I am so glad to say that her urine output has definitley increased and that's very good.

Her liver enzymes have increased by only a bit, that's 100 instead of 1000. While an increase isn't wonderful, it may mean that her liver is just settling down a bit.

Thank you everyone for your prayers.

Wednesday, September 20, 2006 7:12 PM CDT

Laura is resting and recovering. Her vitals all look very good. She is still on her respirator, that may come out tomorrow, and she's heavily sedated and medicated for pain.

Her liver enzymes have increased quite a bit and this makes me nervous although the transplant team has looked at the numbers and feels things are all right. A transplanted liver has been through quite an ordeal and it takes time to settle down also, adult livers(she got a small adult liver) are more volatile than pediatric ones.

The blood flow to her liver is being carefully monitored and looks good.

Her vitals are very nice and she has a steady temp of 98.6 and no sign of infection. This is such a blessing.

Although she's doing relatively well, I don't feel we are quite out of the woods yet until her liver normalizes it's functions.

Thank you for your continued prayers and support.

Tuesday, September 19, 2006 8:12 AM CDT

The transplant team got called at 2:00 a.m. for a liver that they think is good.

We have just received word that Laura has been called down to pre-op in about 10 minutes.

At this time it appears that we have received a gift of life.

I'm going back to be with her. She knows what is happening and is calm with the situation.

I pray all goes well.

The operation will be anywhere from 6-10 hours. I will post as I can. Computers are scarce.

11:00 a.m.
Laura is currently in surgery all is going well at this time.

6:19 p.m.
Everything is Good!!! Thank you, God.

Laura is back in her very same room Ped's ICU. Everything went well, she received a whole liver from a deceased donor, a young adult. The surgeon was concerned that the abdomen may not be able to close and mesh would have to be inserted until the liver shrunk itself down, but that was not the case. Her original liver was large, enabling thhis one to fit nicely.

She will recover in PICU for a while and then get moved back up to the transplant floor.

I am so extremely grateful to everyone who has helped us and prayed for us.

God is good. Please remember her donor's family in your prayers.

Monday, September 18, 2006 5:04 PM CDT

Laura's fever peaked at 102.5 last night and then went down. This is very nerve-wracking for me and I am so thankful that it came down.

The fever seems to come and go mainly in the evening. Infectious Disease Doc's are keeping close tabs on her because they are worried about bacterial and viral infection. The only explanation I've heard is that it may be the liver itself fevering.

The transplant team has told us that if the fever stays up that high for an extended period of time, they will probably send her down for a CT scan and put a fluid collection drain in her tummy under anasthesia. They are worried about an abcess developing. I hope that doesn't happen.

We have consulted with smoe special Pain Docs who work at alleviating pain with a variety of different methods. I am praying that they can provide her some relief. It's hard on her liver to keep processing pain meds all the time.

The cure to this ordeal is a new liver. Thanks for your prayers and continued support.

Sunday, September 17, 2006 5:42 PM CDT

Laura has remained stable today. She's been up and eating but gets very tired, she sat in a chair for a while this afternoon and got mad at me several times.

She's lost some excess fluids in her body and that's good. Her bacteria cultures for infection have come back negative. Her temperature tends to rise and fall a bit, that makes me nervous.

Her transplant Dr. told me today that he feels comfortable being a little bit particular about accepting a liver and has passed on at least one. He doesn't want to give her a liver that's recieved too much trauma. He is pleased with her situation at this time and is not feeling desparate.

Yesterday two of her IV's went bad and we had to start a new one this morning. That went well and all of her lines have been moved over to her other hand for a while. She even made a joke about how tangled things got and said that we should spray detangler on them.

I can't believe we've been at the hospital for almost three weeks now. I hope we get back upstairs to 6B (the transplant floor) soon, we're still in ped's ICU.

I am SO glad she is doing well. Thank you everyone for your continued prayers and support.

Saturday, September 16, 2006 6:55 PM CDT

Laura has been doing well today, she needed some potassium so that's been added and she needed some blood. We are having trouble balancing out her pain meds so that she's getting enough, but too much her liver isn't metabolizing it well.

She ate solid food today and actually enjoyed having visitors and felt good enough to watch a couple of movies.

Her vitals are creeping up and that makes me nervous, but it maybe because of the pain issues.

I am so thankful to get through this day relatively well.

No call yet. Please say a prayer for Laura.

Friday, September 15, 2006 6:05 PM CDT

Laura is doing much better today, her vitals are more stable, she was able to sit and do activites for a good part of the day. She had her hair shampooed in a hospital "shampoo cap" and I got most of the matted tangles out of the back.

Her liver numbers are not too bad, and her vitals are very nice and pretty close to normal.

She wanted to eat, and just finished a bowl of cereal, and is a bit nauseated now and we are having a tough time getting another vein ready for a peripheral IV line, we're going on round three for needle sticks.

Her Dr. that performed the oringinal transplant is back from a trip out of the country. He cut his trip short in order to get back here. God bless him, he is extremely dedicated man.

I believe the power of prayer has delivered her. We still need that call for a deceased donor liver. The right side of her liver is functioning, but the left side is decaying and ideally should get removed as it may cause infection. Her Dr. could remove it now, but it is just better to wait rather than have a another invasive procedure.

She is comfortable for now, I pray the upward trend will continue.

Thursday, September 14, 2006 4:32 PM CDT

Laura is doing better today but she's not well by any means. Her temperature has come down, pulse has dropped about 30 beats this is good, she ahs managed to fight off some kind of infection on her own. Her liver enzymes are still high but that is good. It means her liver is still functioning.

We are still working on finding the best possible living donor for her. There is no final decision on that yet, it takes a lot investigation by the transplant team.

Our ultimate hope is that a deceased donor liver becomes available.

Laura had quite a few family members visit for her birthday and it was the best possible birthday she could have under the circumstances.

Please pray that she gets a liver soon, thank you for your support.

Wednesday, September 13, 2006 4:06 PM CDT

Laura has been stable since yesterday. Her liver enzymes and ammonia are going up but, I don't even want to look at her blood draws at this time. I all ready know that they are bad.

We are currently working on finding a living donor. Thank you to all who have so generously come forward to be donors. You are all extremely brave. Right now, we have a decent size pool of donor names to consider and nothing has been decided as of yet. There are many considerations that go into this decison. Everyone would love to help Laura, especially me, but I am trusting the transplant team to make the best choice for us. If we need more possible donors to come forward I will let everyone know ASAP.

Our immediate family is not considered a good option for this because we have or carry the disease that Laura has.

Laura is reasonably comfortable at this point, she's is in ped's ICU, her pain meds have been increased. Her vitals are up and she's taking lots of meds to keep her in good shape.

Tomorrow is her birthday and she's agreed to let us decorate her room and have her brothers over. No cake.

The best outcome to this situation is to get called for a deceased-donor pediatric liver but this is unpredictable.

Please say a prayer for Laura, she is so brave and such a trooper.

Tuesday, September 12, 2006 8:01 PM CDT

Last night Laura had a CT scan and we found that the right side of her liver is dead due to her artery clotting and denying blood to the liver.

She has been moved back to ICU and is #1 recipient for a liver in her age group across the whole united states.

We also have several possiblities for a living donor.

It is just a matter of time before the other side of her liver closes off and at that point she must transplant quickly.

As of this time she is stable and doing alright all things considered.

Please say a prayer!!!!!!!!!!

Monday, September 11, 2006 2:00 PM CDT

Our liver enzymes are still kind of high today (AST in the 500's)and Total Bilirubin has dropped to 1.5 I don't think we'll be freed today, but maybe soon.

Laura's mood swings have evened out, she was pretty emotional and irritable over the weekend. They were caused by the Prednisone which was lower today. She still has shoulder pain, I was hoping that might go away when she got off her IV last night, but it's still here. She's used a whole box of instant heat packs, but that's okay, she's worth it.

We had to have a birthday party for her brother Jack in her room on Saturday and Laura decorated the cake with her Auntie while we went for dinner. It was nice to have a happy occasion. She told me to buy him a water bottle that he could drink out of while he's at football practice.

It's not unusual for a new liver to have fluctuations for a while as it adjusts to it's new home.

Redheads are so dramatic!

Sunday, September 10, 2006 5:52 PM CDT

Laura is doing much better today. Her Dr. told us that she maybe getting out on Monday or Tuesday. We'll know more tomorrow.

Her labs are much improved:)

Saturday, September 9, 2006 9:55 AM CDT

Laura's biopsy results came back last night. They indicate rejection and she's being treated for that. Prednisone has been added to her I.V. Eventually when things stabilize and her liver settles down her Prednisone will taper and maybe disappear but for now, it's helping her.

When I talked to her Dr. last night I had her put this event on the Richter Scale for earthquakes, had this been an earthquake she said it would have been about 5.0. this helps me put a better perspective on things.

She was very uncomfortable yesterday and had quite a bit of abdominal pain. Pain meds have been a huge help for that and she is doing much better this morning and back to solid food, being perky, and watching Elvis again.

So, after things settle down and everything looks good, hopefully we'll be able to go home. No word on when that may be.

Friday, September 8, 2006 2:54 PM CDT

Laura's liver enzyme levels continued to climb last night and her temperature has been elevated (100.1) today.

Yesterday her transplant Dr. ordered a liver biopsy to decide if rejection is causing these problems. She had the liver biopsy earlier today and we won't have any results until after 6 this evening.

If she is having a rejection episode, it sounds like her meds will be adjusted, perhaps Prednisone added. Currently she's on Cellcept and Prograf for rejection.

It's not unusual at this time for a transplant patient to have some kind of rejection episode, the liver is not in danger and the blood flow through the liver is all good. Most recipients have some type of rejection happen and it gets taken care of.

Laura had a very hard time sleepng last night and didn't like the biopsy ordeal today, but she's resting and watching Elvis movies.

If you'd like to send her an e-mail message that gets delivered to her hospital room, please go to www.fairview.org and choose the U of MN Medical Center choose "send an e-card" form the menu.

I've been on pins and needles, thanks for your support. :)

P.S.-It's her brother Jack's birthday tomorrow, if you have his cell# call and sing to him.

Thursday, September 7, 2006 10:26 AM CDT

Sorry I couldn't get on a computer yesterday, they were all in use and I tried three times. We had word late yesterday afternoon that Laura should be going home today. This is such good news, she's getting well enough that she doesn't want to be here anymore.

Her back and shoulder pain cleared up probably because her internal wound drain (JP) line was pulled out. She was quite uncomfortable during that process, but no tears.

Today she will lose her Hickman, that's a line that goes into her chest for meds and fluids. She has indicated that she wants some pain relief for this one. She had the option of leaving the Hickman in for her many upcoming blood draws, but she said "NO", she doesn't have any problem with needle sticks.

Her liver enzymes ALT and AST are elevated today. It doesn't sound like she's going to be kept here because of that. We may have to check on that tomorrow with a blood draw.

She also had two episodes of diarrhea this morning, that may be from bodily stress, diet, or antibiotics. Overall she is doing very well

She's excited to leave!

1:50 P.M.

Bite my tongue!

We are NOT leaving today, Her transplant team reviewed her liver labs and want to do an ultrasound this afternoon, her doc's would like to keep her here until they know her numbers are down a bit.

These elvevations could be due to pulling her J.P. (because that wrapped all the way around her liver) and that just shakes things up a bit to get pulled out. It could also be that her liver is just sort of settling in. Everything else, looks good, temps are normal.

Her ALT moved from 176 to 326 and AST from 122 to 338. I'd like to go home, but these numbers would make me incredibly nervous. I guess it's best to get this nipped in the bud.

Laura was a bit distraught over this but she's doing okay now, she called in to the hospital t.v. show and won the trivia game. She got a cool puzzle for a prize and now Dad's taking her outside to sit for a little while. At least Laura and I can look forward to one more night of making Hospital Smores: one piece of chocolate, 2 graham crackers and a chunk of ice cream. Campfires were not encouraged.

Thanks everyone for your calls, visits, cards, flowers, balloons and prayers Laura likes getting them so much.

Tuesday, September 5, 2006 2:48 PM CDT

Laura is continuing to do well, but her white count has elevated and she's had a low grade fever (100.3) for the last two days. There are several explantions for this. One is possible infection in some of the liver's duct work, the other thing may be that her lungs are just a little bit weak as she is post-operative and could be causing a bit of low-grade fever and also dehydration since she was unhooked from her drip yesterday.

So, she was hooked back up with IV fluids and will have them at least until Thursday. She started some anti-biotics just to be safe and she is also drinking lots of water, and puffing on that flow-meter thingie that strengthens the lungs because she doesn't want to drag that I.V. pole around with her. Her Dr. is not worried at this point and these things don't indicate rejection they are minor post-surgical complications.

She also she has some pain in her shoulder due to some the lines still running in her, one JP, one Hickman, and a bile bag. That seemed more troublesome yesterday than today and Tylenol helps.

This afternoon the hospital put a special kids show on t.v. from the pediatric ward and the kids could send a favorite toy or animal to be introduced on the show. Of course Laura sent her most favorite doll in the world, Baby. She was just thrilled to see Baby on t.v. it made her SO happy.

Monday, September 4, 2006 12:38 AM CDT

Laura had a difficult night, she was awake with pain and couldn't sleep very well. We got her pain meds changed so she doesn't get so groggy, and we'll try oral Tylenol today.

As happy as she was to get some tubes out, she didn't realize that she would have to wallow liquid icky-tasting medicines last night and that was like pulling teeth. She may be more reasonable today because she's won't be as groggy and she also needs a nausea med before all the other stuff.

Her blood pressure medicine has kicked in nicely and her b.p. is down to 129/82. Her temp is bit elevated but nothing to be alarmed about.

She took a long walk and elevator ride up floor 7 where her physical therapist had her practice getting in and out of the bathtub.

She gets to have the regular ped's food rather than clear liquids, but I doubt that she'll eat very much.

All in all things are well and she's looking at going home somtime mid week.

Sunday, September 3, 2006 11:41 AM CDT

Good morning, Laura is continuing to get better, her bilirubin is down to 2.6 today, her enzymes are going down too. Her blood pressure was elevated due to fluid retention and pain.

She's got meds now for BP and this is normal for a transplant kid. So don't be alarmed. She also had some nausea and vomiting, but got meds for that too.

She had a nice long walk around the unit today and yesterday with her physical therapist. That's very good and hopefully she'll get the nose/GI tube pulled out today. The key is to get her gas moving. She will lose the catheter for sure today.

She's still sleepy and not very interested in things, but she can play for a couple minutes before losing interest.

More later.

4:00 p.m. Today Laura was "The Biggest Loser", I mean that in a good way! She lost her nasal/gt tube about an hour ago, she lost one of her JP's (for abdominal fluid drainge), she no longer needs oxygen so that nose thing is gone and the catheter is gone. It really feels like like we're travelling light.

Her nausea seems to be better so she's going to have a delicious dinner of clear liquids this evening. She also is sipping some Sprite.

Her mood and humor have improved in the last few hours and she's smiling here there.

Oh, she's also visiting the bathroom with assistance but everything is flowing smoothly and abdominal gas is moving out.

I'm so happy, her progress is wonderful.

Friday, September 1, 2006 11:14 AM CDT

Here is a more in-depth update for all my "I need details" people. I'm just going to type whatever random thoughts my little brain can recall.

We got a call about a possible available liver for Laura at about 6:30 a.m. 8/30. In the past year Laura has been doing pretty well as far labs go and her Peld score was around -3. That score determines her priority level on the waiting list, -3 is extremely low prioity. She's been listed for 4+ years and in that time, I have become so relaxed about this whole process that I didn't *think* that we would be getting the call anytime soon. In fact, it was good that I had listed my son Matt's cell number as an alternate contact because I didn't even have a phone in my room as I was sleeping. Boy what a shock! I'll never forget the sound of Matt's voice, he was shaking and crying because he was so happy.

The night before, Laura was having a sleepover at Grandma's with her cousin. When she found out we were coming to get her, she was a bit sleep deprived and not happy about missing out on making cinnamon rolls with Grandma. :( She was crying, more from missing out on fun than anything else. We got to the hospital about 8:30 a.m., through rush hour, ugh, where it was hurry-up and wait. She had a chest x-ray height/weight, pre-op shower and all that good stuff.

We waited in the hospital all day, she could not eat or drink even water, so Laura was a tad cranky (understatement)and wanted to go home, she was also scared, but she knew that she wanted to get this done and expressed that several times. She was excited to think about the prospect of being in gymnastics in the future. During the hard part I out-and-out bribed her with a fabulous item called "The Biggest Littlest Pet Shop" which was a great incentive to get through the waiting.

Around 5:00 p.m. we found that the liver had been pronounced all-good to transplant by the transplant team and this was going to happen for sure. Many times people get called and don't get transplanted for a bunch of different reasons. Because she was in such good shape while she was listed, her Dr. reassured us several times he wouldn't let Laura get a liver unless it was "the perfect liver for her" and I know he had turned down at least one possible match because the liver wasn't in good enough shape.

She went to the operating room about 7:30 p.m., they spent about 2 hours prepping her for incision time by entering all kinds of tubes, chutes, etc. and hooking her up to the respirator. During that time, the donor liver was also prepared to fit properly. It was a tad small but will grow to adjust itself. Her bile duct was too small to hook up to new liver, and her surgeon construted a new one from a bit of her intestine. This is not unusual and we were prepared for that. Her Dr. was kind enough to take a photo of her old liver at my request, I'm just curious as to what it looked like.

Due to donor confidentiality, all I know about the liver is this: it came from within the state of MN from a child who was a just a bit smaller than Laura. Please say a prayer for the donor's family, they are so brave and so generous.

The operation went well, they were finished about an hour before the estimated completion time that I was given. Laura went to ped's ICU about 5:30 a.m. she's been there since and will get moved up to the transplant floor today and I will be able to sleep in her room tonight rather than in the family room lounge.

Her new liver is doing just fabulous! Initially the liver goes through the stress of adjustment, her bilirubin rose to about 8 and today her bilirubin is down to 2 and ALT/AST (liver enzymes) are improving. I can't remember anymore numbers than that.

She's getting more and more alert and had Dad open her Littlest Pet Shop thing so she could look at it. She'll be in the hospital for a few more days about a week maybe more total, depending on how she does. She won't be back at school until around early October.

I'm SO happy (((((HUGS)))) everyone, thanks so much for all your prayers!

Thursday, August 31, 2006 8:14 AM CDT

Laura got a liver last night. She was post-op about 5 a.m. She's doing fine. I'm going to bed. I've been awake for a along time and there was no sleep to had in the surgery lounge.

Wednesday, August 30, 2006 12:52 AM CDT

We got a call from FUMC this morning at 6:30, we are at the hospital now.

The transplant team is waiting to look at a donor organ and decide whether it looks like a "keeper". If so we will proceed quickly to pre-op. The operation itself should be about 6-8 hours in all. There are too many variables right now to guess what time it would take place.

Please say a prayer for the donor's family, all we know is that it's someone about Laura's size.

I'll post as info becomes available.

7:44 p.m. Laura just went into surgery, needless to say the liver looks good. The operation will finish up sometime tomorrow morning. I expect that all will go well.

She has been cranky and anxious most of the afternoon mainly due to not eating since last night. She had tears, but is doing okay and the staff is just excellent with her.

Please say a prayer.

Thursday, May 25, 2006 12:38 AM CDT

Laura is doing much better she's back at school, all day every day and is keeping up with her work. She's still a bit tired after school but she's doing much better.

I should mention that she had a nasty ear infection and a couple of other viruses since we got home from the hospital. Seems we had a very late virus season this year. Her liver is about where it was before all this started to percolate so her status on the transplant list is still very low priority and that means we probably won't get called anytime soon. This month is her four year anniversary on the list. She was offically listed May of 2002.

She's looking forward to her dance and piano recitals that are coming up next month and she's also going to need summer school for math but Laura loves school. She's also very happy to have her big brothers home from college, except when they eat all the chips and dip.

Mom, Julie

Wednesday, May 3, 2006 11:35 AM CDT

Laura's been home since late last week and she's doing much better. Over the weekend she was very tired and had to rest quite a bit. Her appetite was okay but not great her digestive system slowly returned to normal, we've abandoned the Immodium and returned to Lactulose (one of her normal meds for reducing ammonia levels).

Laura did muster enough energy to attend her cousin's wedding on Saturday and she had great time, but she was still tired. As it turns out, one of the bride's friends just happened to be Fairview hospital's family activity coordinator, Emily, and she'd seen Laura in the hospital every day we were there and brought movies, books and games for us. She also got to visit with her Aunt Linda from Baltimore and Uncle Steve and Aunt Dena from Portland OR.

We had a follow up visit with her pediatrician on Monday just to check up on her and all seemed well. I haven't gotten the blood results back yet but no news is usually good news. I am hoping and praying that this episode was just a virus that behaved very badly, that her liver numbers will settle down and she's going to make a come back.

Today is her first full day back at school and Laura's VERY happy to be back. She was actually upset with me in the hospital that she had to miss school. She is so not like her brothers!

Julie

Thursday, April 27, 2006 1:15 PM CDT

Laura's doing better and she gets to go home today! Her labs are slowly returning to normal and her liver is functions are good.

She's still has a pretty good case of diarrhea, she will have to drink plenty of fluids to avoid dehydration and will need to see her Dr. next week for labs.

She is very excited leave and wants to go home. It is SO nice to be done with the IV drip and not have to drag a caboose around behind us.

Thank you everyone for all you prayers thoughts and support, we are very grateful for everyone's thoughtfulness.

Julie

Wednesday, April 26, 2006 11:49 AM CDT

Sounding like a broken record here, but we're staying for at least one more day. This episode has offically been called "viral" as many cases of similar things (sudden high fever, vomiting, diarrhea) are being seen in the community at large and nothing is showing up on the many test and cultures that have been done.

Her white count has come back closer to a normal range and now she's being kept at the hospital because of the level of fluid output brought on by the diarrhea. Her output is higher than what can be dripped into her little body through her I.V. She has orders to drink, drink, drink. One nice thing is that the diarrhea got her ammonia levels all the way down to 19, it's usally in the 60's. I guess that would be the only up side to this episode.

I saw her labs for the past two days and while they're worse than usual, they aren't too bad considering her illness. Her liver and kidneys are functioning as usual and her labs should slowly return to normal. This doesn't(at this time) change her status on the transplant waitng list, she's still considered low priority and she's not experiencing fluid retention, fever or abdominal pain or any sign of liver failure. Her bilbirubin is still uner 2, so her liver seems to be stable at this point.

Laura's being a wonderful little trooper through all of this and the ped's ward does an awesome job of entertaining kids and explaining events and tests to them. Yesterday she made Blood Soup using Hot Tamales candy, mini-marshmallows corn syrup and rice so that we could talk about red and white blood cells and all that good stuff.

Please keep her in your prayers!
Julie

Tuesday, April 25, 2006 11:39 AM CDT

Well, we're not going home today. I think I knew better than that. Laura's gut dr. was just in and said that her Absolute Neutrophil count (this is a white blood cell count)has dipped below 500 and that's too low. Staff entering her room has to masked, gowned, and gloved in order to keep from infecting her with something new.

We still don't have a definite answer as to why. The lab is doing several tests on her stools looking for various unusual infections. If the Netrophils remain elevated after her a.m. labs tomorrow, hematology will be consulted, but, like Scarlett, we'll think about that tomorrow.

Laura still has diarrhea and is on IV fluids, she's had some low grade fever off and on but overall is comfortable and doing well. She broke out with some huge fever-blisters yesterday afternoon, inside and outside of her mouth. She's moved from clear liquid diet back to solid food, whatever she wants! Yahoo!

I'll update as soon as I know anything more.

Monday, April 24, 2006 10:15 AM CDT

Laura woke up feeling sick yesterday, Sunday. I had a bad feeling about this. She had a temp of 101, vomiting and diarrhea. I knew this could be viral but in the 24 hour period preceding she had absolutely no indications of the onset of illness. In fact she was doing very well, she went biking, she loved the her cousin's singing performance and had a wonderful day on Saturday.

We went to urgent care through our local clinic but were told that even though they can order blood work to be done their lab was closed and we'd have no result until Monday.

Our next trip was the U of M hospital ER. Of course she was admitted, IV'ed and had the necessary blood taken for labs and kept for observation overnight.

So as of now, Monday a.m., her fever has come down, she is taking in small amounts of clear liquids and feeling somewhat better. She still has quite a case of diarrhea going on. Her GI doc has decided to keep her at least for today. It's possible she could be home tomorrow and that's what I'm hoping for. We are wating for Ultrasound results on her spleen and kidneys just as a precaution given her condition.

Her liver numbers are somewhat elevated but overall not alarming. She's not complaining of abdominal pain and doesn't have a lot of fluid in her gut. These are good things.

Please keep us in your prayers
Mom, Julie

Wednesday, March 1, 2006 1:12 PM CST

Hello, Laura's been doing very well as of late as far as her labs go. I have a feeling something internal is bothering her as she is tired, very emotional actually asking to go bed early. Now, I should say that she's had a persistent boil or possible panniculitis (skin affliction associated with Alpha-One)and the antibiotics (quite high dose)are wearing her out. It looks like it's going away, cross your fingers.

We met with her kidney Dr. at the U of M yesterday (Laura's kidneys are enlarged due to the condition of her liver) he's very pleased with her overall health and especially pleased with her blood pressure. It was creeping into the high range but is back near normal now. I'm still waiting to her about her bloodwork, but I expect that it's okay.

We'll see her liver Dr. at the end of the month. Her PELD score (for liver transplant priority)is currently -1, very low priority.

Laura's still particpating in dance, piano lessons, church activities and school as usual and I don't think it's wise at this time to add any new activities. I am noticing that she's having a very hard time recalling her math facts, this could be liver related and would (I am told) reverse itself post-transplant.

Laura's been incredibly sad because her very excellent friend, Yu Jin, has moved back to Korea but I'm sure we can find a way to communicate. We miss you Yu Jin!

Mom, Julie

Monday, September 26, 2005 4:39 PM CDT

Sorry I haven't posted in so long, it's just that Laura's done so well lately that I tend to totally forget she's on a transplant waiting list.

Her PELD score after her June labs was -4 and after her September labs it went even lower to -5. This is very good news, it means that she's doing very well. Of course she'll remain listed but her status is very low priority.

Laura has started fourth grade and seems to like it just fine. She's still keeping up with homework, piano, dance and choir. She also participated in the Love Your Liver Walk on Saturday and went the whole three mile distance for our team, The Leaping Livers.

She's had a couple of viruses all ready but with no dire consequences and she'll be in for a flu shot soon. I am going to have her chronic sniffling looked at by a Doctor. From what I understand, sinus and liver problems can be related, don't ask me how . . .

Cross your fingers and hope all stays well!
Mom, Julie

Wednesday, June 22, 2005 2:20 PM CDT

Laura had such a terrific time at the Elvis Dance! All her friends were there, she had the cutest hairdo in the world, Elvis sang to her and everybody had a great time.

KARE 11 News was there but we didn't get to see the story air. It was shown on Saturday morning and we were watching on Friday night :(. We'd like to thank everone who was involved, it was very special.

Tonight Laura has her big dance recital and she's wearing the most beautiful costume I've ever seen. She looks just like a Rapunzel Barbie. I'm hoping to get some digital pictures and get them on the site. She's also working very hard at swim lessons, but this is quite exhausting for her.

Last Wednesday we met the Drs. at the Fairview Pain Management Clinic. I should say her pain has subsided nicely since her gut Dr. decided to try taking her off of her diuretic, Spirionolactone. I wanted to cancel the pain appointment (because she has been doing so well) but I didn't just because it's so darned hard to get seen in that clinic and it's best to have a plan in place. What they prescribed is an external patch called Lidoderm that will be absorbed by the body and be worn for 12 hours at a time. This will be interesting, I'm hoping I won't have to fill this Rx for a long time.

We also saw the gut Dr., and her PELD score (for liver transplant) has gone down from -1 to -4 so this is good overall. She's kind of on a hold status at this time and she ususally does much better in the summer than other seasons.

Have a great summer everyone.

Mom, Julie

Wednesday, May 18, 2005 8:54 AM CDT

Laura's ongoing abdominal pain seems to have settled down at least to a degree that she can function with. While it was bad we tried giving her Tylenol as her Dr. recommended, but it just didn't help. Her Dr. has adjusted her diuretic, Spironolactone, down from 15 ml a day to 10 ml a day. It seems to have helped, she still has mild pain during the evenings and sometimes in the morning but mostly she's okay:)

Larua is very excited about the dance on Friday night (understatement!). She's going to wear a poodle skirt, pink of course and an old Elvis t-shirt with his postage stamp picture on it. It's an adult's size large (I was going to wear it) and down to her knees, but she insists on wearing that shirt. Girls just have a mind of their own.

Here are the details for the dance:
Friday May 20 from 6:30 to 9:00 p.m. Tickets are $5 for adults, $3 for children and a $15 maximum for families and can be bought at the door. All children must be accompanied by an adult.
The location is Wilshire Park Ementary School, 3600 Highcrest Road, St. Anthony, MN 55418. E-mail me below if you have questions.

Raffle tickets will be $1 each, you can buy as many as you like, but you must be present to win. We have some terrific prizes including gift certificates from Ficocello's, Green Mill, Cub Foods, Ready Meats, Glamour Shots and many others. Other raffle items are an absolutely beautiful hand pieced quilt by Sandy Kimble, a cute handmade fleece crib blanket & girl's pink fleece blanket, a hand-tied flannel queen comforter (from Laura's gramma), a leather purse, MN team caps Vikes, Gophers, T-Wolves, American Girl soccer outfit, Baker's Square Pies and that's just the tip of the iceberg.

WCCO TV is going to cover the event if nothing "big" happens news-wise that day (like anything could be more important than Laura). I'm not sure when or if the story will air, but if I know anything I'll pass it on.

Laura hopes to see you there. This is going to be the greatest night of her life and she thanks all who have contributed and worked so hard!

All this, Star Wars and a wedding on Saturday afternoon to boot, life for an 8 year old just doesn't get any better.

Mom, Julie

Friday, May 6, 2005 5:02 PM CDT

Laura's had a difficult week. Last Friday she began to have pain on the left side of her abdomen/back are on the left side. It was continuous, mild to moderate pain that kept her from comfortably sitting upright and walking. She also couldn't stand without hunching her shoulders. She had temperature elevations of 98.9 to 99.1.

I brought her to her pediatrician on Tuesday who ruled out via ultrasound, kidney problems and intestinal blockage. She did call our Ped's GI Dr. who added her to his schedule on Wednesday and suspected that she had a "splenic infarction" and ordered a CT scan at the U of M hospital (she was outpatient).

Splenic infarction was new term to me, but thanks to Webster I found that it's an area of dead or dying tisse resulting from inadequate blood flow to the spleen tissues.

Yesterday, the CT scan confirmed that she had not just one, but multiple splenic infarcts. There is no treatment for them except to control the pain. Once the liver is transplanted the spleen (which enlarges due liver problems) will slowly return to normal and hopefully they'll be go away on their own.

As far as pain management goes, our recommendation is to start with Tylenol, over the counter version and use it on schedule every 4 hours as necessary. Many Drs. don't recommend Tylenol for liver patients but it seems to be the best choice now, as her liver is all ready damaged and using other pain relievers can cause kidney/acid reflux problems.

Today Laura is doing much better, she went to school all day, I see that she's tired, but not too tired to play with her friend Mandy. I suspect that this is a pain that will come and go rather than be constant. I am glad that we found some kind of answer for this little mystery. I have a feeling that she's had this for a while and it's only surfaced as background pain during viruses.

As far as Laura and pain goes, she doesn't complain or cry she's just gets quiet. She put up graciously with the CT scan which involved not eating breakfast, drinking metallic tasting Sprite, having an IV and of course the perennial 6 tubes of blood drawn the day before. I have a feeling she lives with so much discomfort that a little more doesn't register all that much. Her Drs. have compared her condition to the feeling of the last trimester of pregnancy where the abdomen and fluid is taking a large amount of space and squashing everything inside there.

She's so very excited about the Elvis fundraiser dance comming up at her school, she talks about it everyday. She also looks forward to the Elvis bio movie on tv Sunday night and we've watched "GI Blues", "Spinout" & "Clambake".

Happy Mother's Day, (I'm certainly happy to be Laura's Mom:)!
Mom, Julie

Thursday, April 7, 2005 12:45 AM CDT

!!!!!!!!!!!Big Announcement!!!!!!!!!!!!!

I'm happy to announce that several Laura fans at her elementary school have set up a Family Dance Fundraiser on Laura's behalf. I should say, not just a dance but an Elvis Dance! Yes, Elvis Lives and he'll be All Shook Up and appearing at Wilshire Park Elementary in full Elvis attire.

It will take place on Friday, May 20 from 6:30-9:00 pm. at Wilshire Park Elementary, St. Anthony, MN.

Raffle tickets will be sold, I will give more info as prices/prizes become available.

Laura is very excited about this and is looking forward to it very much!

Big Announcement #2 (the one I've been putting off for far too long.) I believe the time has come to begin looking for a living donor who would be willing to give Laura 25 per cent of their liver *should* this become necessary due to the lack of available cadaveric pediatric livers.

The living donor will only be a back-up donor unless Laura becomes gravely ill and transplantation is urgent. The first choice of her Dr. is that we receive a cadaveric pediatric liver by waiting on the list. The Dr.'s reasoning for this is that she will recive an entire liver, all the attached veins/arteries will be available for re-attachment as necessary during transplantation.

The members of our immediate family (Laura's Mom, Dad, brothers) are all either carrying or have Alpha-1 Anti-trypsin Deficiency making us (much to my disappointment) ineligible as living donors.

Laura's been on the liver waiting list for almost 3 years now. She is currently at a low level of prioity. I should mention that several years ago, patients were given consideration for how long they had waited on the list, but the UNOS (organ distribution board) has decided that organs should be prioritized in favor of the children with the highest degree of liver failure. So the bad news is she will have to become much sicker before she can reach the top of the list and be of highest priority for consideration.

Now, there is always a chance that things will work out in our favor. That we'll get a call from FUMC and we'll have a liver, but at this time I don't feel it's very likely. Also, because she is doing relatively well, her Dr. is willing to wait for what he calls a "perfect liver", he means one that doesn't have any disease/trauma issues.

If you can consider being a donor I'll make you aware of some requirements (the transplant team will know more).

You must be between 18 and 55 years of age.
Your blood type must be O positive.
You must be in good physical and mental health with no significant history of major medical problems, liver disease, or excessive alcohol use.

Medical problems that would rule out a donor include heart or lung problems, hepatitis, history of cancer, HIV, diabetes of several years requiring insulin use, significant obesity.

Laura's insurance will pay for the donor operation.

You may call Fairview University Medical Center Transplant Center 612-625-5115 Option 1, the toll free number is 1-800-328-5465.

Thanks so much for all your prayers, actions, thoughts. They mean so much to us. God bless you.

Mom, Julie

Thursday, March 3, 2005 10:12 AM CST

Well, Laura saw Dr. Sharp two weeks ago for the on-going abdominal pain she had been experiencing. His best conclusion was that her aches are due to acid reflux. (Laura has an enlarged, liver, kidneys, spleen and extra abdominal fluid, all of which cause pressure on her stomach and cause reflux problems.) So Dr. Sharp's suggestion is that we optimize the Prevacid she is all ready taking by taking it on an empty stomach. The pain has subsided in frequency and intensity, but is still present, especially in the morning and evening.

Yesterday was Laura's regular three month follow up visit with Dr. Sharp and unfortunately she weighed two pounds more than she did two weeks ago. This is not good, it means that her body is retaining fluid and the fluid is located mainly in her limbs, not so much in the tummy this time.

So . . . this means we are adding a new medicine to the all ready existing seven as she will be starting on a diuretic today. This will be our first time with this type of med. I hope it's not as horrible as others we've had to endure.

We reached an all time high for blood draw tubes yesterday at the lab. I actually lost count this time. So, results will be coming for that and I will let you all know what happens. Blood work (among other things) is what determines her priority level on the waiting list. Oh, and Laura never fusses about have blood draws, she is just excellent at it and she picked a travel game of Chinese Checkers out of the prize box.

In the mean time, she is doing well in school and has been there every day the last couple of weeks and is looking forward to spring break. She just discovered Elvis! We have satellite radio and on it, there's an all Elvis (24/7) radio station that Laura just loves. Last week at the movie store I picked up Blue Hawaii for her and she watched the whole ting 4 times, she just ate it up with spoon: teenagers, kissing, beaches, singing, and Elvis all in one sitting.

Friday, February 11, 2005 5:06 PM CST

Hello, it's been a while. Laura has kept me very busy over the last 3 weeks, she has been averaging one nasty virus per week we've had three visits to the pediatrician (not strep, but major ear infection), one visit to FUMC for an ultrasound and I'm still not certain about what's causing the abdominal pain she has been experiencing. She's missed about 8-9 days of school and now that she's back, I miss her being home.

Currently she is feeling better but still gets extremely tired from normal activity. She hasn't had any abdominal pain for the last 24 hours and this is just great. I'm not sure what the cause of it is, the ultrasound told us that her liver, spleen, kidneys, pancreas are all doing as well as can be expected and nothing unusual (for her) showed up with the exception of her spleen being somewhat larger. It's possible all of it was viral. It's also possible a new med that we started (actually a vitamin called ADEK's) was the culprit. Her doc okayed for me to take her off it for a few days to see what happens. I feel like I'm looking for a needle in a haystack. She's going to get squeezed in to see her Ped GI doc next week. I hope he'll be able to shed some light on this for me.

Laura was very happy to be back at school with her friends on Thursday and Friday. She stayed at school all day and this is good. I'm starting to worry she won't pass grade! Just kidding.

The Pancake Breakfast was a raging success, the food was just terrific and I must extend my heartfelt thanks to all who ate, donated money, donated time and talents (especially those cooks!) and those whose contribution was anonymous. Laura had a wonderful day that she truly enjoyed, she had a special bunny pancake, a beautiful flowers and had time to visit with so many people who care about her.

Thank you to all involved especially FLC Men's Club & Youth Group, Thrivent Financial for matching funds, and First Lutheran Church.

Thursday, January 13, 2005 11:10 AM CST

Laura's Pancake Breakfast, here's the definite details I promised.

The date is Sunday January 23, 2005
From 8:00 am to 12:30 pm

First Lutheran Church of Columbia Heights
1555 40th Avenue Northeast
Columbia Heights, MN 55421
Phone 763-788-9653

Ticket prices:
Adult $5.00
Child $3.00
Family $15.00

You can purchase tickets at the door. Donations can be mailed to the church address.

All checks will be payable to FLC Men's Club.

The event is co-sponsored by the FLC Men's Club and the Youth Group. My deepest gratitude to all involved.

If you have questions you can e-mail to the author's address at the bottom of this page.

One of our financial concerns is that Laura will one day reach the maximum benefit on her health insurance policy which is $1,000,000.00. I believe the transplant operation itself will cost around $500,000.00 and we have probably used $100,000.00 all ready. She will potentially be in and out of the hospital pretransplant. Post-transplant she will require anti-rejection drugs and follow up for the rest of her life.

Laura's excited and hopes to see you there!

Wednesday, January 5, 2005 1:37 PM CST

Laura saw her Pediatric GI Doctor (Dr. Sharp) on December 29. It has taken me this long to get her blood results. She does have several tubes of blood taken every three months at her GI visit as a physical exam doesn't tell us much about what's going on with the liver function. Laura's PELD score moved down this time from -3 to -1.

The Peld (Pediatric End-stage Liver Disease)score is how she is ranked for recipient status as far as organ procurement listing goes. (Kids on the list are scored by how sick they are and how long they've been listed.)From what I know, most kids don't receive a new liver until they reach a PELD score of approximately 8 or above. Of course it's possible that she could get the call any time if everything were to happen just right.

Dr. Sharp did tell us that she has come up as a match for a liver in the past few weeks but the available liver was not in terrific shape and because she is doing relatively well at this time, he chose to pass on it. (I was just shocked I just didn't think she'd come up as a recipient, there are about 10 kids in her age/blood type group who have been waiting longer than her *but* I don't know how sick they are.)

Because she is not in liver failure at this time, Dr. Sharp feels it's better to wait until what he calls "a perfect liver" comes along for Laura.

For those who understand the numbers on bloodwork:

ALT & AST have both increased ALT up to 213 (129 in 10/04)
AST 223 (160 in 10/04)

Bilirubin stayed steady at .9

INR 1.41 up from 1.31 (10/04)

I'm including a link for those who need or want an explanation of bloodwork results:

www.classkids.org/library/liverdis.htm

I should also mention that I have noticed this last year or so that Laura's energy and endurance levels have dropped and it's best that we cut down (much to her dismay) on her activities when mom says it's necessary. I am so not popular sometimes but it's no fun to drag her around. And it's important now that she stays free of viruses as we need her ready for an operation at any given time.

Oh, some good news! Our church has organized a pancake breakfast fundraiser for Laura. The date is January 23, 2005 (Sunday) the time will be from 8:30 to 12:00 (not yet certain about this) tickets will be in the price range of $6-7 per person, less for kids. The location will be at First Lutheran Church, 1555 40th Ave NE, Columbia Heights. If you are interested in buying or selling tickets to people you know, or helping at the breakfast, please let me know, use my e-mail address at the bottom of the page.

I will post definite info for time and prices on the breaksfast in the next couple of days.

Thank you First Lutheran Church!

Tuesday, December 28, 2004 2:43 PM CST

Hi, I just thought I'd let you all know how Laura's doing. She woke up sick Christmas Eve morning and vomited, the vomiting quckly changed over to diarrhea which she had about 20 episodes of. But she did perk up and feel better on Christmas Day and opened a few presents, then had to rest.

We didn't get to go Gramma and Grampa B's for Christmas Eve, but we saw them on Sunday. Oh, and my boys were pouting because the Vikes choked. I asked Santa to bring a liver in his sack, I guess he couldn't for some reason.

On Christmas Day evening Laura felt good enough to go to the Rauchwarter family Christams party at the Grand Rios Hotel in Brooklyn Center. She went in the small hotel pool, but not in the water park. (By the way her big brothers said the water park was just awesome.)

Over the last couple of days she has been up and down. I took her to see the Dr. today as she had mentioned ear pain. And yes, of course, we have a raging ear infection, also a possible urinary tract infection which can both be treated with Amoxicillan.

We're going to see the Gut Dr. this week. I'll let you know how her labs turn out and if I find out anything new.

Happy New Year, everyone!

Tuesday, November 16, 2004 11:38 AM CST

Yes, we're back from the Pediatric Nephrologist's office here's how it went.

Dr. Kim did not see any reason at this time to do a kidney biopsy because Laura just isn't that sick, her kidneys are functioning well but blood/protein levels in her urine are elevated, her kidneys are enlarged. The reason he gave for this is either it's because she has Alpha-1 or its because of the cirrhosis caused by Alpha-1.

It is generally the case that any kidney problems that occur in kids waiting for liver transplant reverse themselves post-transplant. So this will probably not cause any permanent damage.

Laura's blood pressure is falling in the high range of normal (BP and kidney function are related). Laura's BP will continue to be monitored three times a week. (THANK YOU, School Nurses!) She doesn't need BP medication at this time unless it continues to rise.

We will have to visit the Pediatric Nephrologist again in a couple months, as he will be monitoring her progress. Laura will have a kidney ultrasound in a couple of weeks. (She'll have to drink 30 ounces of water just before, eek!).

I did notice that she had gained about 12 pounds since last June. Good for most kids but not good when it comes to liver problems. She may be collecting more abdominal fluid which is common with liver problems.

Our next Dr. visit is at the end of next month with her Pediatric Gastroenterologist (GI Doc) and I will keep all you Laura fans posted.

Wednesday, November 3, 2004 11:48 AM CST

Laura is currently functioning well, attending school every day and doing better as her Dr. (Harvey Sharp) has implemented a new medicine to her regimen to better control her ammonia levels.

We are scheduled to see Dr. Kim, a Pedriatric Nephrologist, at FUMC in a couple of weeks. He will be taking a close look at Laura's kidneys as they were enlarged last spring when she was hospitalized for infection. Also Laura has had elevated blood pressure and we'll look into this and hopefully have a clue on that.

Our appointment is mid-month so I will post results after all her tests are in.

On the Laura personal side she is on her third week of piano lessons and she just loves it so much that I have drag her away from the paino:)! She's also participating in dance and kid's choir at church, but she does get tired easily.

I'll post a picture of her as soon as my technology challenged brain can handle it.

In the mean time we are waiting, sometimes patiently, sometimes not(!) for a miracle. Prayers are SO welcome! Thanks for visiting.

Julie Rauchwarter

Click here to go back to the main page.

----End of History----